Could there be a new “cure” for Down Syndrome? The internet is buzzing today after the September 4th edition of Science Translational Medicine published a recent study about how a team of scientists from John Hopkins University used an experimental compound to reverse the Down syndrome like learning deficits in mice.
Fox news reports that they accomplished this by:
“…injecting a small molecule known as a sonic hedgehog pathway agonist into the brains of genetically engineered mice on the day of their birth. The treatment enabled the rodents’ cerebellums to grow to a normal size, allowing them to perform just as well as unmodified mice in behavioral tests…”
Roger Reeves, one of the researchers behind this study, had previously found that a characteristic of people with Down syndrome is having a cerebellum that’s approximately 60% the size of a typical person. In order for that important brain region to grow and develop, a small population of cells in the brain must quickly divide and multiply shortly after birth.
These brain cells require a specific growth factor known as sonic hedgehog pathway (not to be confused with one of the greatest video games of all time) in order to stimulate the cells to grow and divide.
The researches determined that a person with Down syndrome did not respond as well to this growth fact, and it actually stunted the development of the cerebellum (the region of the brain import to cognitive processing and emotional control.) So they thought if they could stimulate the cells at birth they could make up the deficit.
In order to test the theory, Reeves and his team used some genetically engineered mice which had extra copies of about half of the genes found in the 21st chromosome, which caused the mice to have many of the characteristics of Down syndrome such as a smaller cerebellum and learning difficulties.
The researchers injected these mice with a sonic hedgehog pathway agonist on the day of their birth. Here’s what they found:
“From that one injection, we were able to normalize the growth of the cerebellum, and they continued to have a structurally normal cerebellum when they grew up.”
In further testing the “mice with Down syndrome” preformed just as well as “typical mice” at tests that measured their spatial learning and memory capabilities.
In other words, they “cured” some of the characteristics of Down syndrome in these mice.
This treatment has yet to be proven effective in humans with Down syndrome, and future research is needed to determine exactly how and why the injection improved the mice’s cognitive abilities.
It’s also important to note that this study is aimed at new babies born with Down syndrome, unlike this study that is working on improving the life of people already living with Down syndrome (like my son.)
Studies like this bring up a lot of questions and thoughts for me; to many to go into on this blog post. However, I’d love to hear your thoughts about this study and the conversation about “curing Down syndrome” in general. Would you allow your child to take medication to help them with some of the cognitive / learning delays that is often a characteristic of people born with Down Syndrome? Why or why not?
Leave your comments / thoughts below and let me know what you think.
About Rick Smith
As a mom of daughter with DS, it seems like these Drs are trying to “fix” the baby as if something is wrong. There is so much out there about the medical problems associated with DS, the learning difficulties, etc. but what about all of the great things that are kids can and will accomplish. I’m just so sick of hearing about “cures” and “fixes”.
I think one person working on one thing does not mean others can’t be working on other things. Yes, babies with DS aren’t “broken” or need “fixing” but if something like this can help them, why fight it?
A lot of ground breaking things come from studies that were trying to find something different. It is possible that while looking for a “cure” they may find a “treatment” to help with developmental issues as well. Things that will help in conjuction with EI.
It’s really not a zero-sum game.
I do not believe their is a cure. Years ago they didn’t think these babies would even live a long life. My cousin is in his 60’s. Never was much of a life for him, but the love his family had for him. DS babies can do so much more. More people care then they did years ago. Except and love them 🙂
As a grandmother of an 18 month old grand daughter with DS, would I want her to undergo or have undergone this type of “cure”? NO…NO…NO. She is perfect and I wouldn’t want her to be anyone other than who she is right now. She had heart surgery at around 6 months old but that was a very necessary surgery. Would this “cure” improve the quality of her life? She’s surrounded with love, support, family and friends. She brings so much to everyone’s life and is destined to lead a life of purpose and fulfillment.
What’s next….do we inject ‘normal’ children to increase their IQ levels??
Dear Wendy, let’s say I am a granddaughter of an 60 year old grandmother with Alzheimer, would I want her to undergo or have to undergone a new type of “cure” to prevent the ravishing effects of Alzheimer? NO…NO…NO. She is perfect and I wouldn’t want her to be anyone other than who she is right now. Would this “cure” improve the quality of her life? She’s surrounded with love, support, family and friends. She brings so much to everyone’s life and is destined to lead a life of purpose and fulfillment. Hm, somehow I don’t think your reasoning would settle well to those dealing with the debilitating effects of Alzheimer in their lives or those caring for them.
As a mother of a 28 year old daughter with downs, whom I love DEARLY, I have to disagree with your thinking. I have walked through the JOYFUL, FUN days of her childhood and seen her struggle into adulthood. She has always taught me so much about life, sensitivity, peace, joy, spiritual discernment and so much more. She has been surrounded with a family that loves her dearly. However, I have watched her long to do what others do, desire and not be able to express her emotions, struggles or not know how to deal with the fearful things that happen around her. I have also seen her regress into autistic tendencies and even Alzheimer like tendencies. That was a painful time! Having DS isn’t all fun and laughter. We have done much with natural, alternative diet and supplementation and seen much improvement. That has taken hours and hours of research, time, and effort. There are great challenges in some of these children at different times. I have constantly been seeking to improver her quality of life and enjoyment. I think we need to be open to checking into research that would improve the life of another individual whether it is the grandmother with Alzheimer or the sweet downs children.
Always, gratefully, Rachel’s mom (and according to Rachel, her Sweetie Mom).
I completely agree with you Linda. My daughter Holly is almost 8 and I wouldn’t change her for the world. She has DS and that’s the only thing I would take away from her and purely for her to have a better future for herself. We love her so much and are so proud of her. She’s gorgeous and will have a go at anything with gentle encouragement. She’s doing great at Mainstream school. All research is welcomed to me and for all conditions.
My first reaction:
IF this were proved safe with no harmful side effects I would ABSOLUTELY have done this when Ruth was born 6 1/2 years ago. But no way would I take advantage of something like this now. Now she is who she is and this would change that. I would not even do this NOW I order to address her stubbornness and believe me, that is saying something.
My second reaction:
I really do hope this type of research continues to address issues like early onset Altzimers and the higher incidence of leukemia seen in the Tri21 population.
My third reaction:
I’ve read enough science fiction to know this type of mucking about never ends well. Yes, I know they are just stories but I think of them as thought exercises for the future. There are so many more questions that have to be addressed then just how this affects the Tri21 population.
Who will pay for this?
What happens to us as a society if only rich people can afford this?
How is this any different from abortion? (ok, that’s an easy one but the underlying thought process is not that much different)
What happens if this is injected into a typical newborn?
Flowers for Algernon, Beggars in Spain and Speed of Dark are just the stories I know of.
And if you want to flame me go ahead and get it out of your system. I never read the comments anyway.
Diane I agree with you. My son 7 with DS is perfect. When I was expecting the doctors said that twin 1 had 3mm of nuchal fluid on the back of the neck, with 1:20 chance of abnormalities. Twin 2 had 1 in 1000. Well I thought GOD can give me twins GOD can give me special needs ‘BRING IT ON’ and the doctors were wrong!!! I was offered a termination of twin 1, as they are non identical, one being a blue one and one a pink one. Now 7 years later, my little girl is fabulous and her only problem is that she is 7 going on 17. My little boy twin with DS is fabulous and his only problems are copying his twin sister. Yes he is delayed but I would not change him, as he is will achieve anything he wants to and will and does amaze us every day. Hugs Claire xxx
Hi Claire! I would love to talk to you sometime if you would be willing to share your experiences on raising your twins. I have twin girls (one with DS) who are 21 months old and will soon have to make some decisions about preschool and things…….it would be nice to get your perspective on things.
Us too… two little girls one with DS 16 months old now…. what a journey it has been so far….. would love to chat to you both….
Hi Ann-Marie, I would love to chat with you as well! Are you on facebook?
WOW, I have 26 yr old twin girls, one with DS – I haven’t met too many parents with the same situation. They are both my “baby” girls, always have been and always will be – however, Kathleen Is the light in EVERYONE’S life. On the topic of discussion here, I honestly don’t know if I would’ve allowed this to be done to her at birth, it’s a two sided coin. She is who she is and our gift from God, but I’m sure if she had a choice she would rather be like her sister.
Hello all,
We also have twin girls just turned 12, one of them is with DS. Its been a (joy) ride of my life so far. I always believe that one should not tamper with mother nature. Let nature take its course of action. However, we in our part go all out to do what we have responsibility to do towards our kids, whether mainstream or special needs. Be open-minded. In our days we never had mobiles and Skype, but the world has changed substantially since then and today we can see each other over skype whenever we want. Changes remain constant, let’s pick-up the good ones with prudence and utter care. Rest we leave to Almighty. God Bless All.
We are probably a long way away from this being tried on humans, but the issues surrounding it are challenging. Parents make choices today to give their children with ADD or ADHD medicines that impact brain functioning with results that some would say are quite positive. But, make no mistake, the brain is being stimulated.
“For someone with ADHD, stimulants regulate impulsive behavior and improve attention span and focus by increasing the levels of certain chemicals in the brain, such as dopamine and norepinephrine, which help transmit signals between nerves.” — http://www.webmd.com/add-adhd/guide/adhd-stimulant-therapy
So, I don’t think we can say that, just because we are talking about the brain, somehow medical intervention is off limits. However, since personality can be affected, parents would want to tread very carefully. I would be most concerned about that. Would I like my son to be able to better focus and improve his learning capacity? Absolutely. Would I want that even if it risked changing his personality. Not likely.
I would generally agree that if the child is happy and well taken care of, any modification that could risk changing that child’s personality with the hopes of improving cognition is probably not wise. But if side effects were not an issue, society would be benefited by people with Down syndrome becoming more embedded into everyday life.
Totally agree with you!
Agreed Joel !!! Let’s continue to support research so that we don’t stop until we find an option where there is NO SIDE EFFECT that would alter/impact personality. I think you hit it on the head with that distinction…IF a compound was discovered that helped improve cognition/memory/learning and also one to prevent early onset AD I believe many in the DS community would embrace, or at least seriously consider. You are so right in how much society would benefit from people with DS being more embedded in everyday life! There are 400,000 individuals in the US alone w DS, working together we can accomplish anything we want to for our loved ones…lets fund the research and decide what we embrace and what we reject…but in order to even do that, to put those options on the table, we need to fund the research.
I go back and forth on what I think about possible medical breakthroughs like this one. On one hand, I believe God has given us/others gifts to make these types of things possible, and it could mean amazing benefits in regards to the challenges people with Down Syndrome face, (if it had similar effects on people). On the other hand, I also believe that our perfect God does not make a mistake, and the more I get to know my son (who has DS), the more I feel the benefits of knowing him in the midst of all of his challenges far outweigh the benefits of being able to avoid those challenges all together. If a “fix” would have changed his character and demeanor in order to aid in his cognitive development, I may be selfish for feeling this way, but I just don’t think it’s worth it.
I totally agree with all that you have said. People with Down’s are an “endangered species”. We all learn so much by having these folk in our world as well as other differently abled people. Let’s embrace all the variety in our wonderful creation.
As a mother of a three year old with down syndrome, I personally wouldn’t change her for the world… We are supposed to teach our children but I honestly feel like she is teaching me. We were very fortunate, she is very healthy and doesn’t have any of the known health problems that are associated with down syndrome. She can count to ten , she knows her ABC’s, she is potty-trained, she loves to sing and “beat up” her little brother…. Lol what exactly needs to be changed with children like ours? While there is a very broad spectrum, they are just as capable of learning what “typical” children learn it just takes a little more effort on the teacher’s behalf. So I guess my answer would be no I wouldn’t want to cure down syndrome, but as a first time parent hearing that there will be something “wrong” with my child and this would “fix” them… Maybe other people would feel differently!
WOW! This is very interesting. Would it be right to change what God has created? Is that what were doing anytime we introduce medicines and other medical procedures to help a child (born or in utero)? Only prayer and a parents sincere desire to choose what is best for their situation can determine this. Knowing that a child with DS is going to one day grow up, require care and assistance until they leave the planet, makes for a huge challenge in thinking what is right. Would this “fix” make them able to earn their own way and be totally independent one day? That would be a wonderful success within itself, but changing the personality of a DS person would be tragic. The unconditional love, acceptance and joy their personality presents is difficult to challenge. Is a 65 year old with DS the same kind of person as a child with DS?
NO! Life and years change them into older people with big health issues and often left alone or put away to be “cared for” so, yes it would be great to “fix” the inmature nature and learning capabilities of an unborn or newborn with DS. Will it happen anytime soon-no way. So prayer and planning are the solution to “fixing” DS issues and nothing medicine does can compare with this plan.
It really does make you think…would I use every available and safe option to ensure my son has every opportunity to lead a happy, healthy and productive life? Yes, I already have and continue to do so every day, isn’t that why we spend countless hours with therapy and doctors etc? again…yes.
I tend to be skeptical of every study that comes to press. My first question with this study is, isn’t the mouse artificially replicating t21? How will that change things. I am sure this is a long way off.
I am more excited about advances in Alzheimer treatment and am hopeful THAT research and those studies get the funding and attention that is needed not only for our children with T21 but for a large portion of society.
I wouldn’t change who Jacob is, but I sure welcome any advancements in science that will enhance his life.
I’m very torn on this issue. Part of me (the “teacher” part) is thinking, “that’s fabulous; something has been found to, perhaps, minimize the learning deficits in children with Down Syndrome, which will help them lead a more “typical” life.” The other part of my brain is saying, “but there’s nothing “wrong” with these kids; why mess with it?”
Here’s the deal.. Often times, we notice the love in children with DS and people comment on that and appreciate their hugs, etc. If we “cure” DS, are we stripping away characteristics in our children that reflect Jesus? Would it be okay to change their DNA that God co-created with us (parents) in order to give them a more “normal” life? Would giving our children with DS a “normal” life make them more sinful and less loving?
I am thankful to have a son with DS because God is much more visible and real in our life with him. We have a living/breathing testimony. We don’t have to worry about what people will think if we bring up God in a conversation. His grace, love, and provision is painted all over our lives.
Who’s Jesus?
Annie,
Great question. Jesus Christ is the Son of God who is the Creator, Savior, and Sustainer of all things !
John 1:1-3 – In the beginning was the Word, and the Word was with God, and the Word was God. He was with God in the beginning. Through him all things were made; without him nothing was made that has been made.
I groan with every mention of “God” in threads of this nature. I wonder if the same people refuse cancer treatment because the cancer is God’s will.
Of course, if something goes through rigorous clinical testing and is proven to improve the quality of life of an individual with DS then, yes, I’d definitely go for it for my daughter. I echo what was said above – it’s the same reason we seek out every other kind of support like speech therapy, occupational therapy, physio…the list goes on. Much of this is required for cognitive reasons – if that could be helped early on then a great deal of these other therapies could be avoided.
Your little boy or girl will still be your little boy or girl!
Just asking for clarification – are you saying you view Down syndrome as a disease, like cancer?
No, DS isn’t a disease like cancer. And of course God has nothing to do with it: he is far too busy in outer space trying to keep meteors from destroying this lovely Earth and trying to protect out galaxy from colliding with another one to worry about fixing minor blemishes like DS. So we are going to have to look to science for help. If there was a one-off, irreversible, magic bullet that would prevent some or all of the negative aspects of DS such as learning difficulties without unwanted complications, then I think we would crazy not to cautiously encourage further development and in due course, clinical trials. It will be a slow process, we meddle with our biology at peril, but it would be progress. In the meantime, lets give all our kids every opportunity to thrive as valued adults.
Jamie, I agree with you and I knew what you were trying to say.
Hindsight is the clearest way to see things…so on one hand, I would have loved it if Jake’s early life would have been without cognitive delays such as speech. But, on the other hand, this study does not say anything about the curing of health issues, which have been a bigger problem. Would people still accept Jake if his IQ were average…but other aspects of him were still Down Syndromesque?
I had a brother with Down Syndrome, he is no longer here, he was a perfect soul in an imperfect body, there’s nothing I would change about him… But I think people should try to find a cure for ignorance and stupidity!!!! Then this world would be fixed!!!! People with Down syndrome are teachers of life!!!! That´s my opinion!
love ur comment for once ive cn it that im not alone in what i think . My son Josh is 4 yrs old with DS & i wouldnt change anything about him
Edith, though your follow up on this subject was very short and to the point, I enjoyed your comment and thoroughly believe the same way. I am a great grandmother of a three year old Down Syndrome little boy, and this child is so precious to me, I sometimes wonder if there is a special purpose God actually has, sending those children to earth with special problems, that seems to cause situations that sometimes some of us have never actually experienced in our lives before. I honestly feel that it is to show a person like me what real love and “heart” is. I love all my family members tremendously, and especially the awesome little ones, but it took this one’s birth to bring about my enormous God Filled heart of special love that I have now, for all things living. I’ve always had a heart filled with much love for my fellow man, but this baby has filled me with emotions of love and concerns for my fellow man than I ever thought possible. God bless you and yours. ……Dottie Copeland, Nashville, Tenn.
Well Said, Edith, and thank you for saying it. People with Down syndrome are indeed teachers of life, and also of love, empathy, compassion, humor, and forgiveness. My 8 year-old daughter has already touched so many lives just by being her own wonderful self, and btw happens to have an extra 21st chromosome.
No one would second guess a cure for diabetes or cancer. And a parent who medicates their child for ADHD or depression isn’t doing it because they don’t love their child for who they are. I grew up with two sisters who had physical and developmental disabilities, and they would have given anything to have a cure. So would my parents. We watched them struggle, and eventually they passed away. And, yes, I love my son just the way he is (DS and all). But if given a safe cure option? I would take it in a hot second.
Yes I would allow my baby to have this done. And I think if parents knew about this while pregnant, and maybe deciding on abortion, maybe they would give that a second thought,knowing there is something out there to help their child become better at doing things in life.
niño de 5 años es perfecto, no lo cambio por nada del mundo. quienes somos nosotros para renegar de la voluntad de Dios.
los científicos y la ciencia debería de invertir su tiempo y dinero en investigar a fondo enfermedades como VIH, CANCER, ETC,
recordemos que el SD no es una enfermedad es una condicion.
I keep reading the article and everytime i read it i think a different thought. I mean it would be kinda selfish if i didnt give my son every opertunity to be the best he can be. I mean if this would offer him a better quality of life i would consider it.
I know i may not always be here for my son. The Lord will call me one day. And when that happens i want to be sure my son can do for himself without me. Right now i have alot of support and help from family. And a very loving husband who would do anything for his kids but who knows what the future holds. I guess i cant answer right now if i would do it or not. I would have to see the risks and if the good outweighs the bad i do whatever my son needs. Not just him because he has ds but any of them.
The so called “cure” has been out there since God knows when. Why do we have to fix what is not broken. I have two adults with Down syndrome and they are perfect just the way they are!!! I don’t believe in using “people” as guinea pigs anyway.
My daughter will be 35 next month. When she had cataracts she had surgery. When we found out she had a thyroid condition we got her medicine. She has a hernia and we’re going to get that fixed. If she had any other medical issues we would do whatever we could to solve them. She is pretty high functioning now but if there was anything we could do to make her smarter and better equipped to deal with the world on her own we would do it.
Down Syndrome is genetic… it CAN’T be “fixed” or “cured”. Exposure to early intervention, learning, education and opportunity, a Down Syndrome person can be taught and trained to achieve like any other person and be part of society in their own way.
My daughter is 29 years old. She’s not a professional but she is able to live normally and take personal care of herself and keep occupied without assistance.
I would not do this no matter what age my son would be. You can not fix something that isn’t broken. My son was born this way, that would be trying to change who god made him to be, Who are we to play god ? I love my son the way he is, he’s perfect to me no matter what the world thinks his disabilities are .
Thanx for this info. I say oh please to this and includes everything/anything else beyond this. Because I feel theres more risks involve then anything else. In which I’m for in certain situations. At the same time I take everything with gain of salt.
I for one I’m still truly sorry for all of the trouble that I have caused, last yr. Unsure if we are equal at fault here.
I would/will… my fifth child has ds …if this becomes available and can help him overcome obstacles, obstacles that are present due to the anomaly, I would welcome the opportunity to see him benefit, and allow him to shine through even more. Ideally, live a life with more opportunities and reach his own personal best…just as I have done, and attempt to do, for the four children in front of him. I already send him to thousands of hours of therapy so that he can work to reach these goals, so in my opinion, we have already committed to do what we can to attain this.
Greetings Rick, Noah, and others,
It has been enjoyable to monitor parent’s (and grandparents) reaction to this recent study. Rest assured they are a long way from testing this out on humans with Down syndrome given they would need to make sure that there are no major side effects as the person ages. As a scientist in early intervention and Down syndrome (treadmill training), I have to accept that this type of research is very sexy and fundable from NIH whose research panels consist primarily of medical researchers. Keep in mind that they are using genetically modified mice so it is a huge leap to non-modified infants and fetuses with Down syndrome. This leap will take many years, if it happens.
I thought the comments from a few parents was interesting as it related to trying to study ways to positively impact the earlier onset of Alzheimer in the population of DS individuals. Although I do not study Alzheimer in DS, the research in the general population would strongly suggest that sedentary lifestyles we frequently observe in adolescents and young adults with DS contributes meaningfully to this earlier condition. It certainly does to the general population.
So what would I do?
Starting early in life, maximize the frequency and intensity of interventions in the motor and physical activity domains in an effort to get them crawling and walking earlier and better which should afford them with many opportunities to move around their environments and learn (cognitive development) and socialize. Once they are walking, start working on other gross motor and basic sport skills (kicking, batting, throwing, catching, hiking, play skills, etc). Leg strength must always be increased. During the later elementary years they need to begin learning a few life time physical activities such as swimming, bicycling, dancing, martial arts, etc. Although we have been very successful using the Lose The Training Wheels program to get about 70% of children with DS riding a two wheel bike in 5 days, we also learned that in Michigan they only ride a few months of the year. When it gets hot they stop and as soon as it starts getting cold they stop. The point here is that it is critical that they learn a few physical activities to the level of skill development so they can participate in them year round and indoors.
As I have often told Rick, I learn more from the many parents I have worked with that drives my research agenda.
Dale
Why would you want to change their l oving sweet personalities. If they could improve on their cognitive abilities, that would be a good hing and maybe the heart issues. It’s a hard question to answer.
That’s the way I lean right now. If there was a medication that would help someone with Down syndrome learn better and increase their quality of life, why not allow them to take it?
I think it’s a dilemma. The child would be of higher intelligence but would presumably still have the outwardly physical characteristics of Downs Syndrome which could lead to more vicious bullying against the child. I think in theory it’s a great idea but is probably too early in its infancy to be fully considered as an option.
I agree. I think some thing like this is a long way off.
I come from Malaysia where there have been some parents who resorted to injecting rabbit stem cells in their children. Xenotransplant is highly controversial but it has been touted as some form of “cure”. Russia’s scenar cosmodic wave therapy has also been suggested to my daughter. I am not trying anything right now – am still sticking to the tried and tested methods of lots of physio, training and nurturing. I still have doubts and would like to research further. For most parents, I think we’ve pretty much accepted our children with their own uniqueness but deep down, we would of course want to make our children’s life better and easier.
I’d like to know what you meant be new babies?how old should they be to benefit from this cure?
Thanks for your comment. The only thing I know is what I shared in this post.
Do you have a child with Down syndrome? If so how old is he/she?
Hi guys, may I at first say ” Big hello to all of you from Croatia ” !
Well, it is in my opinion commendable that the science is trying out new ways to help our children, as we are always happy to see any kind of effort and progress being made in any field of health and science… That being said, I think all of these experimental methods of helping the disabled persons have still a long way to go, and I do wish all the best with future research, however, I know it takes time and money, I only wish we can all find it in our hearts to help each other by sharing experiences, advices and why not , material support to all those who need it , because, if we don`t make any effort to take it up a nodge, who will ? For example, we live in Croatia, Europe, but there is so much difference in treating Down Syndrome in Croatia ,and for example in the nearby state of Bosnia; Here in Croatia, because of the general economic crisis, most of the early intervention and further support for DS kids is based on self-financed or voluntary bases ( We pay the logopedic, fisiotheraphy and funcional learning ourselves, some parents go to courses and educate other parents, we struggle for everytihing…) , and in Bosnia, for example, people with the children with DS don`t have the opportunity to get those therapies even if they offered to pay for it. So we spread the circle of education, lend each other the talk tools and all the other stuff you can imagine, bercause it is the only way to achieve something.. That being said, I hope all the people will find it in their heart to help someone else with lesser means, be that just for a simple education toy, a learning method, or a new biological tratmen, when it is approved… Once again, we all wish you all the best and a lot of joy with our kids !
Can we hear from the people that actually live with DS? isn’t it their opinion that counts? Would they want this treatment? I have to believe most would.
My daughter is 1.5 month old with down syndrome. Is there any cure?
What about stem cell therapy?
If this particular article is for new born, then what do you suggest me?
She has a hole in her heart too. Doctors says that she will require surgery after 2 years.
I am in Pakistan and can travel anywhere for her. Pls guide
Appreciate the Great work done on this blog.
If the doctors could convince me that there would be no harmful side-effects (or they were exceptionally minor), I believe I would go with this option. My son is a fabulous 3 year old boy, and I love him with all my heart. One thing I really wish for him is the ability for him to achieve whatever he desires to achieve. Note, I’m not saying that I want him to achieve what I want him to achieve. I very specifically want him to achieve whatever he wants to achieve. I will gladly do anything I can to help him with such achievements.
The toughest part with something that would be done as an infant or a young child is that he’s not yet had the opportunity to decide what he wants to achieve. In an ideal world, he’d be able to make the decision of if he wanted such a medical procedure. However, if I was convinced that any side effects were trivial or non-existent, then I would feel that giving my son such a treatment would be an extra boost to helping him achieve whatever he wants.
They shouldn’t be calling this a cure….that really bothers me…my soon doesn’t have some sickness that needs to be cured
I think what needs to change is the way people treat individuals of all ability levels. The problem isn’t the individual with DS, it’s society. Not everyone is the same……so are they looking to change people with red hair because they say they are more sensitive ( http://abcnews.go.com/Health/PainManagement/dentists-tread-gingerly-redheads/story?id=8293620). This can lead to behavior issues!! My point is this………..Yes, IDs can be challenging at times, but what isn’t? Changing our children isn’t going to stop society from judging them or thinking of them as a burden. They may still have some sort of issues later on in life. We just don’t know. What happens if they get into a car accident………suffer brain damage? If we learn to accept people for who they are and for what they can do and adapt to THEM instead of thinking they need to adapt to society, things would be so much nicer!!
Why oh why ………… my son is 31 years old has Down Syndrome and I would not change him or things for the world
My 4 year old daughter has Ds. While I would love to make her life better, I don’t know I could do this. Ds is a part of who she is and, honestly, I don’t want to change anything about her. Personally, I feel this world would be a better place if more people had someone with Ds in their lives.
My baby niece was born with down syndrome and sure she had health complications here and there but she is the smartest, happiest, and now healthiest baby out there. This little angel brought our family back together. I dont think there is anything wrong with people with down syndrome but it would really be up to the parent if they want their child ‘tampered’ with because to my understanding there is different’ levels’ of DS. There isnt really any right or wrong here as long as it doesnt cause any harm to the baby
My daughter is perfect just as she is and I see no need to fix or cure anything because there is nothing to fix or cure. Yes, she does have three 21st chromosomes but that is just one piece of who she is – one characteristic of who she is – like the fact that she has brown eyes. She is beautiful and fun and loving and feisty and we wouldn’t change her for anything. I think the key is acceptance and realizing that disability is a natural part of the human experience.. let’s accept people with disabilities and love and respect them for who they are instead of trying to change them (cure or fix them.) If society would be more accepting, loving and inclusive and let go of it’s notion of perfection, I believe we would not even be having a conversation about a cure for Down syndrome. I believe this kind of thing does more harm than good. How would you like to be a young adult with Down syndrome who realizes that there is a test for pregnant women to learn if the child they are carrying has Down syndrome and that 90% of those women chose to abort when they learn the child does have Down syndrome and how would you feel if you read a story that talks of a “cure” for having three copies of the 21st chromosome when you are perfectly happy with who you are and your life including the fact that you have Down syndrome. I bet it wouldn’t feel very good. As for me, I treat my daughter just like my other children and guess what?, she is just like my other children. They each have unique characteristics, personalities and needs – she is no different just because she happens to have Down syndrome.
You cant fix something that’s not broken. There is nothing wrong with kids with ds. I have a son who is almost 12 with ds, he is the light of my life. There is not one thing I would change about him. It is disgusting that there are ppl out there that in a sense want to rid the world of ppl with ds. These kids are amazing just the way the are.
I am so very proud of my son’s cognitive development. He will be 3 in April, and he is very smart. We have begun spelling and sight words. He has been singing his ABC’s and identifying all of his letters for quite some time. He responds to visuals, but also answers correctly if I spell a word. For example, if I ask him, “What does b-u-s spell?” He will say bus. He does this with several other words. The sky is the limit. I don’t know if people understand that there are a lot more kids out there who do not have Ds who are very limited, as well. You get out what you put in. My mother always said this. I have taken this advice to heart. I think we are a long way away from my feeling comfortable with this; we have no clue how this could affect a person for the long-term.
When my son Solomon was born 3yrs so a NICU nurse said to me God only gives these babies to special people. That’s right I said it, I feel privileged to be raising a son with D.S . He has brought nothing but joy to EVERYONE he comes in contact with. I’ve have seen him bless random people at the grocery store just by waving and smiling and saying Hi. So with that being said if it ain’t broke don’t fix it.
Here’s my joy to the world Solomon.
Love this, thanks so much for sharing! Where are you guys from?
When my son was born 30 years ago, the newest ‘cure’ (or something to at least help) was to give them fetal sheep brain cells. No way! At least not for MY kid. I always leary of any ‘cure’ for something. As my pediatrician once taught his medical students—“Never be the first to try something. Give it a year at least before you try anything just on the market. Chances are the ‘new thing’ won’t be around in a few years.”
When the Lord healed my son of his severe heart problems, I truly believe Down Syndrome bended at its knees to his glorious power! My son is perfectly and wonderfully made, and a very precious gift to me and my family.
I think we have to stop using the terminology “cure” in these aricles and discussions. It creates a hot button within the community and segregates us from one another. I am all for safe effective ways/tools for enhancing cognition. All the therapies we do are for just that. However this does not eliminate the extra chromosome and cogntion though important is only one aspect of DS. I have seen so much infighting over this topic. Hopefully something good will come of all this research and enhance the lives of our extra special kiddos!
(Mom to Kieran 11yo DS/ASD)
I agree with you. People are also quick to jump on the word “fix”. There is no fixing. This idea wouldn’t cure anything, all it will do is help them to learn and live etc. I really don’t understand where the attitude comes from that we shouldn’t do things that will help our kids..
I am the mother of an 8 year old boy with Down Syndrome. My opinions are generally very unpopular with a lot of parents in the “community”. I am okay with that. Life is too short.
This debate always rattles the masses. I’ve been weighing in for the past 8 years and the responses are the same. Every…Single… Time… I can almost repeat verbatim what people are going to say.
Due to the debate on “fixing” our kids, I have been accused many times of not loving my child. Quite honestly, that accusation is more ludicrous than my opinion that my son should be permitted to live his life to the fullest rather than “make the most of it.”
Let’s be real about this..
If a magic pill was created to make my son a typical child, I would give it to him in a heartbeat. Why wouldn’t you? I think that parents, grandparents, family etc should really get off of their high horse with their attitudes that we don’t love our child for who they are because we would do this.
Yes I do. I don’t have a problem with who he is as a person. I love this little boy to the moon and back. It does however bother me that he doesn’t have the same opportunities as typical children. I want him to have everything.
That’s why I would allow him to take the magic pill. Why wouldn’t you want to give your child the very best that life has to offer? Why wouldn’t you want to give them opportunities that they won’t have as a person with special needs?
I think that we fear judgement more than anything. Our fear of judgement is selfish. There is nothing wrong with wanting the very best for our children. Nobody knows the pain and sacrifice that we face as parents of our children with down syndrome. It isn’t about making OUR lives easier, it’s about the betterment of our children. Who cares what other people think??
People who give the attitude that I somehow think that my son is a “throw away baby” need to seriously get over themselves. You’re never going to get a gold medal for raising your special needs child. Nor am I going to stand and applaud because you did. I also won’t shed a tear for all that you have done.
If you’re one of those people who enjoys being told how wonderful you are for being the parent of a special needs child, my suspicion for most of the people who disagree with me, then you need to seek psychiatric help. Your aspirations of becoming a martyr is a waste of time.
My suspicion also is that the majority of these parents are “closet wishers”. They’re never going to raise their hand and admit that they would change their child if they had the chance. I would. I don’t care if you don’t like me for it.
On that note.. I think that everyone should point themselves also to a book called Flowers For Algernon. It was made into a movie also in the event that you don’t like to read.
WAIT ARE WE SERIOUSLY COMPARING THE BRAINS AND INTELLIGENCE OF MICE TO THE BRAINS AD INTELLIGENCE IN HUMANS AND HOW THEY REACT TO A DRUG. FIRST I HAVE TO AGREE WITH MAY OF YOU…DS IS NOT A DISEASE AND YOU ARE NOT FIXING ANYTHING BECAUSE THEY ARE NOT BROKEN. SECOND HOW CAN WE COMPARE GENETICALLY ALTERED DS MICE TO ANY HUMAN. THEIR MAKEUP IS’T EVEN THE SAME. I LOVE MY SON AND OF COURSE I WANT THE BEST FOR HIM BUT WHO IS TOO SAY HE WON’T HAVE THE BEST THE WAY HE IS. HE CERTAINLY DOESN’T SEE ANYTHING WRONG WITH HIM SO WHY AS A WHOLE SHOULD WE. I HAVE SEEN MANY PEOPLE WITH DS HAVE MORE OF A POSITIVE IMPACT ON SOCIETY OVER THE LAST YEARS THAN I HAVE SEEN OF SOME OF YOUR SO CALLED “NORMAL PEOPLE” INSTEAD OF TRYING TO “FIX” THEM…WHY NOT STEP BACK AND LEARN FROM THEM, THEY CAN CERTAINLY TEACH YOU A THING OR TWO ABOUT UNCONDITIONAL LOVE AND SELF WORTH….PUT THAT IN YOU BEAKER AND STIR IT UP A BIT
Very interesting first step, but remember this is just the first step probably in a long series of steps to resolve this problem.
No, I would not subject my children to these expirements for the following reason: Scientists have done experiments in genetics that at first seemed to have very satisfying results, so they continued the experiments. It wasn’t until the third generation that they discovered that the species had become sterile and incapable of reproducing another generation.
I wuould not subject my kids to a possible unknown threat it simply is not worth the risk.
People with down syndrome are loving and happy. We have a lot to learn from them. Society is so “me” orientated. People are depressed, anxious, unhappy, materialistic and selfish. Striving to have the “perfect” figure/physique, job, relationship, car, house/possessions. Psychologists, Psychiatrists and Pharmaceutical companies are making a killing. Where is the joy, love, acceptance, contentment, kindness and devotion? We are blessed to have these divine people in our lives. A world without down syndrome would be a sad, cold place.
It is beyond my comprehension to deal logically with the defensive, self-serving posts from those who “wouldn’t change” a thing about a person not blessed with attributes that the rest of us take for granted. Too bad you can’t consult with the DS person and see if they’d like the opportunity to learn, grow, travel, marry, have children, appreciate great music and literature, among other things. I know most people fear change — but you would seriously prefer your child to be more of a pet for you than a total human being? Are you afraid to lose control of them? Don’t give me this crap about “they are perfect the way they are.” NONE OF US IS PERFECT, including you and me. But if you feel that you would deny anyone the opportunity to live their life to the fullest, then I hope you never get cancer and have to turn down the chance to get chemotherapy.
I would absolutely sign my son up for this!!! I see parents on here don’t share my enthusiasm for a “cure” for Downs but I’m not one of them. My son has many problems due to Trisomy 21 and if there is a way to make his life easier so he can be happier then I’m going to do it. It has nothing to do if whether I think he is “Gods little miracle” or “just fine the way he is”, it’s about making his life better. To be able to enjoy and appreciate the simple things. Driving a car, playing on a sports team without the coach or school making a “special exception”, being in a relationship and one day having a family of his own. If you ask me, I think anyone who is against a “cure” is selfish and not thinking about the child. Society nowadays shows us if you’re different it’s OK. It’s accepted unlike it was 20-30 years ago. However, would you rather your child have Down Syndrome or not. I would rather my son not have it. Not because there is anything wrong with having Downs, but rather he will be able to experience more in life and NOT be bound by roadblocks (so to speak). I thank the scientists working on a cure and hope they keep doing their job and making miracles happen.
Hi
iam a mom too Silas how has Ds and is 4 years old. Why mess whit natrue ???? Natrue gave us Ds fore a reasion Sorry me bad English
we need the cure for down syndrome
I’m not sure how to express my feelings on this.
1. If I am truly honest with myself and others, there is a part of me that before Ben was born might have wanted to cure his DS.
2. Now that Ben is here and I understand more about DS, I’m not sure I would want to, even though the thought is interesting, but I still don’t think I would want to.
3. I understand the desire to “fix” what society sees as broken. However; I do not feel my son needs that. I still understand where they are coming from in the thought process though.
4. God made Ben and Noah perfectly the way he wanted them to be. Just as he has made you and I the way he wants us to be. Everybody brings certain things to the world that better the world, bring us and others to understanding of things God wants us to know. And if I were to step in and try to be God and change that creation, I might miss out on some of the most beautiful and important lessons I have learned from being Ben’s mom.
5. Did I mention Ben is perfect the way he is? Well, just to say it again. He is perfect the way he is.
🙂