In August of this year, a scientist at the University of Washington presented a new study on the possibilities of removing the extra chromosome that causes Down syndrome. A subsequent study discusses the chance of curing Down syndrome with a chemical component after proving its effectiveness with lab mice created with a genetic abnormality that is similar to Down syndrome. In both cases studies are only that—experiments tested on the brains of mice whose genes have been altered to represent the condition of life with an extra chromosome. These kinds of investigations take years, perhaps decades, and they still need to analyze the secondary outcomes—or side effects—of these treatments, especially the impact they can have on the physical health of individuals with Down syndrome. I don’t have a medical background, so this is my understanding as a parent reading about the studies.
All this exciting news makes people react in ways that, while logical (I guess), still surprise me. They take for granted that people like me would be jumping up and down with excitement. But these are the same people who still believe there’s no joy or satisfaction in raising a child with Down syndrome or special needs.
I am the perfect target for all kinds of comments, as I am a mother of two children with Down syndrome and I also work as an advocate and educator. So people just assume I’m enthusiastic about these potential “cures.” But to be honest, while I think the news is great, it’s just not that important to me.
I would be much happier if science could find a cure for the following conditions, to relieve the suffering of children and the desperation parents feel when:
– They tell you that your child was born with a heart defect, and you feel your own heart hasn’t worked right since that moment.
– The doctor warns you about your child’s blood disorder, and the news makes you want to take your own blood out of your body and trade it with your son’s.
– When you spend days and nights in a hospital chair asking God to give you strength to breathe, and love and faith to empower your child to fight and to never give up.
– The feeling of absolute failure and hopelessness when you can’t afford to pay for a good doctor or specialist, or for that therapy that’s not covered by your insurance—if you have insurance, that is.
These are the things that I wish we could cure. The challenges I face with my kids’ learning and development? Those don’t afflict me. To me, those are slow triumphs that we all learn to love and accept without comparing them to any other kids. I’m not perfect, so why should I expect my children to be so?
Yesterday, someone said to me, “I’m sure you’re happy with that cure for Down syndrome. After so many years fighting, finally something good happens for these people.”
My response was: “The truth is that my children are very healthy at this time. They are not ill at all. After three really bad months with asthma, Emir is doing great and is back to his normal routine. Ayelén has always been very healthy. So no, I’m not looking for a cure; and they look healthy to me.”
The “battle” with Down syndrome is misunderstood by many. We don’t fight our children’s Down syndrome; instead, every parent fights every day to give their children the respect and the opportunities they deserve. That’s it.
I do not want to heal my kids. I want to cure the world of prejudice. Then, there would be more opportunities; more educators ready to understand how easily adaptations can be when they are willing to work together with parents. Then, more companies would understand that behind the myths of the slowness and stubbornness, there are loyal human beings—dedicated and structured people ready to show who they are and what they can do when they are welcomed with trust and tolerance.
If we can create a cure for Down syndrome, perhaps it would be very positive for the new generations of children born with the condition. It may create a different future for those who come into life. But in my case, with two children aged 9 and 6 years, I do not believe in chemical miracles to improve who they are. Because for me, they are the real miracles.
For now, as parents, we must continue educating the world with the cures we already have—our dedication to and faith in our children, using our voices, our love and our joy. Above all, it’s free, and it’s organic!