27 Nov A “cure” for Down syndrome? — Reader feedback #5

Previous posts questioning the efforts to “cure” Down syndrome begin here and here.

Peter Elliott, Research Director for the Down Syndrome Research Foundation UK, writes:

In today’s world, the parents of children with Down syndrome can raise their hopes and change the future for their child. Surgeons can repair a malformed heart and this is very common in Down syndrome.  Internal organs can be repaired, including Hersprungs where the baby can die within days of being born.   Then there is the very high risk of Leukemia, Celiac disease, and there is an impaired immune system which makes survival difficult for a host of illnesses.  All of these can be treated with modern medicine and the children survive.  Most will call these cures.

The last challenge is the mental handicap caused by a disturbance to the brain chemistry.   We now know there is this chemical imbalance which not only effects and impairs short term memory it also prevents the fast processing of information and the formation and accessing of long term memory.

Full post after the jump.

Jesus said, “The truth will set you free,” and the truth is what many of our parents have been very afraid to weigh in the balance when they consider what is best for their child who has Down syndrome. What is hard to think about  will be impossible to fight for, and the children are the ones who suffer because of this.

Any child can have the outward appearance of perfection while having very  serious health and development problems including mental health problems. This was discussed by Langdon Down in his lectures.  He said this was happening 150 years ago.   You cannot diagnose medical needs based on the outward perfection of the child, i.e.  they are loving, happy, wonderful etc.

Its fine to say these things if you are aware of the truth and doing something to get research needed to help these children and the adults they will all become, but it is selfish to put a child’s life and health at risk,  because we can’t bear to think about the truth.

Lots of parents do not have this option. They have children who are facing very serious problems.

Down syndrome is not lovable and its not part of a child’s personality.  It really is a collection of medical and developmental problems. Dr Langdon Down gets credit for this syndrome, but he never said it was a good thing to have.  He wanted a cure, but in his day there was no possibility, so he told doctors to not raise the hopes of the parents.  They were told what to say and we are still hearing these things today.  But times have changed.

In today’s world, the parents of children with Down syndrome can raise their hopes and change the future for their child. Surgeons can repair a malformed heart and this is very common in Down syndrome.  Internal organs can be repaired, including Hersprungs where the baby can die within days of being born.   Then there is the very high risk of Leukemia, Celiac disease, and there is an impaired immune system which makes survival difficult for a host of illnesses.  All of these can be treated with modern medicine and the children survive.  Most will call these cures.

The last challenge is the mental handicap caused by a disturbance to the brain chemistry.   We now know there is this chemical imbalance which not only effects and impairs short term memory it also prevents the fast processing of information and the formation and accessing of long term memory.

Early intervention and special education cannot cure this problem, it just makes the best use of what can be achieved.

Medical research is discovering those chemicals in the brain that are disrupted and medical therapies are being tested. Fortunately many of these drugs are effective for dementia and Alzheimer’s and our children are at 100% risk of these medical conditions. So the same drugs that can rescue our parents from dementia are the drugs that can help our children, and drugs that can help our children could one day help all of us.

This medical research can  transform  lives by providing 40 to 60 years of healthy brain function and an independent life for this population, instead of a much shorter life that is demented leading to Alzheimer’s.

Parents can talk in terms of love, but love involves caring for all of the child’s life including the future years when they are on their own. Down syndrome  is not a blessing,  it is an illness and we know a great deal about this illness.  It needs a cure for the remaining mental health problems.