I have to be honest. There still isn't a moment of a single day that I don't ache about the idea my only daughter has Down syndrome.
But what if she didn't, what if she could be cured? I'm probably going to lose a lot of followers but understand this is my opinion, this is where I am in this journey.
There's been a buzz of discussion about the latest research published in July regarding a cure for Down syndrome, shutting the extra chromosome off and the DS community has frantically reacted.
Here are my initial thoughts.
1. The DS community is worried about the extinction of or babies, the extinction of Down syndrome. Seriously folks I have tried every possible angle and can't wrap my brain around why having fewer people with Down syndrome is a fear? Help me to understand.
I'm sorry but if fewer people will have the opportunity to bypass countless hours of therapy, the taunting of peers, rejection, medical appointments, surgeries, etc... I'm all about supporting this scientific endeavor.
2. My second point is that the reality of the cure is so far fetched that there is no reason to panic, not now, and not even 100 years from now.
Last month marked the first time this experiment has been successful turning off one tiny single chromosome in a Petri dish. (A chromosome is a strand of DNA that contains hundreds of genes. Genes contain the codes to build and sustain life.)
They have just initiated trials on mice but are unsure that the result found in them are going to yield the same results as in humans.
Plus, gene therapy would entail switching off the extra chromosome in every cell - in the entire body AND would
likely have to be done very early in pregnancy which would mean we would have to have a confirmed diagnosis of Down syndrome about the time you receive a positive pregnancy test. Heck, we haven't even perfected diagnosing Down syndrome at full term, let alone 3 weeks into a pregnancy.
3. If someone has seriously come to me offering Maddox a cure for heart disease, thyroid disease, facial deformities, hearing loss, tooth development, problem solving, memory recall, word recognition, digestive issues, Leukemia, early onset Alzheimer's,increased processing speed, strength, and gave her a voice, etc... Why in the world would I not consider it?!
Taking that stance, at least in my mind isn't changing the person Maddox is, it's about giving her a chance at a healthy life. Her focus then shifts from using every ounce of energy on staying medically healthy to being able to focus on things that she has chosen are important to her.
4. People in the DS community are commenting that this research study means we are playing God. Here's a point to consider. Today, 80 percent of babies with chromosomal disorders are miscarried. 20 percent are carried and delivered. That 20 percent exists because doctors have the medical tools and medicine to detect and treat complications preventing the bodies natural desire to miscarry. So I ask, at what point are we playing God, aren't we already? My whole purpose for bringing this up is to show that reason doesn't fly with me.
We have been playing God long before this time, the day ultrasounds were invented, the day epidurals were created, the day we started using tocolytic medications to slow preterm contractions.
In summary, I just want to say, "It's only research, roll with it, let 'em learn from it." The decision to turn off Down syndrome will always be your own personal decision, nobody will force you into it, and absolutely nobody should judge anyone because of the decision they make. But I will confidently admit, I'd totally do it.
I'd trade all the health conditions Maddox will ever face in her lifetime in exchange for a glimmer of a chance to experience a typical relationship, play on a for real sports team, drive a car on the interstate, graduate with honors from a university, get a salaried professional job, build a home, and raise her very own family.
Yes there are some of you that will comment, "My kid with Down syndrome does all these things." I get that. I get that there are supports and exceptions and shortcuts that allow our kids to be as normal as possible and believe me when I say I am so flipping thankful for those resources but there's a part of me, deep inside, that still has those realistic dreams for my baby girl and I'm not sure they will ever go away.
Peace out, thanks for listening, and once again these are my raw unedited feelings. I'm sure a lot of you will be upset with my stance but I pray I'm also the voice for those of you not brave enough to speak up.
All I ask is that you keep your comments nice and let's have a great discussion!