Children get rashes often. If you are a parent, I guarantee you have seen a few red dots on your child’s skin at one point or another and gave the doctor a call. It’s usually nothing and you know it. In the world of parents to children with Down syndrome, the experience is a little different.
A symptom of leukemia is something called “Petechiae”. Petechiae are tiny, disc-shaped red spots on the skin and are often one of the first symptoms of leukemia. If you have a child with Down syndrome, Petechiae is usually reason to rush to the doctor for a CBC (Complete Blood Count). The reason for this is that children with Down syndrome are up to 500 times more likely to acquire childhood leukemia than those without. Yup, you read that read. Five hundred times. Now you see why I have a panic attack anytime my son gets a rash.
It’s a terrifying statistic that just hits way too close to home with me. I have had seven mamas in my Down syndrome Facebook groups hear the terrifying news that their child with Down syndrome has leukemia since Christmas. I can’t tell you how many times I’ve sat in my car sobbing after taking Benny for yet another blood test. The anxiety is unreal…
There’s a silver lining to all of this though. There’s one more thing that is starting to emerge that gives us one more beautiful reason why Down syndrome is the greatest blessing we never knew we wanted. An interesting fact about children with Down syndrome and leukemia is that they have a significantly lower risk of developing solid tumors. What this means, in non-doctor terms, is that something with the way our kiddos reacts to cancer causes the tumors to be less invasive. Now, here’s where it gets good…
This fact led researches to wonder why this happened. You see, another fact is that people with Down syndrome only acquire cancer overall a tenth as often as people without. Even though the instance for Leukemia is higher, there is something in their genetic makeup that is fighting off these horrible cells.
Something about the extra chromosome and the unique changes it makes to one’s DNA is fighting cancer, and researchers all over the world are starting to figure this out. With all the research that is going into it, they are starting to uncover other amazing things about that extra chromosome to help find cures for cystic fibrosis and multiple sclerosis as well.
This all being said, I am still filled with dread every time one of those little red discs shows up on Benny’s skin. I dread putting him through chemo, radiation, or even just seeing him suffer one little bit. I dread this every day. However, the knowledge that this horrible statistic is leading the world to see once and for all that having Down syndrome is not all that bad, makes me very happy.
It’s a complete cliché to say everything happens for a reason, but in my life it’s always been true. What if the people some countries are trying to eradicate from our population are indeed the answer to saving so many? What if that extra chromosome that we thought was a defect was actually the answer to so many prayers?
What if everything we thought we knew about what it means to be “normal” and “typlcal” was all wrong?
Next time Benny gets a rash, I will try to remember this. I will hold him as they draw his blood and try my hardest not to curse God for the many trials he has because of that extra chromosome. Instead, I will thank God for putting this beautiful soul on this earth and hope that he is indeed the answer to curing that horrible disease once and for all.
*Feature photo credit to Sara Demick Photography
For further reading and reference on statistics, here are a few suggestions: