A Sibling With Down Syndrome
While growing up, my mom would always tell me that Michael, my twin brother, has Down Syndrome. She would constantly remind me that he would be different from other children. I simply understood. I understood that Michael may have different needs than other people, that he couldn't talk to me, that he would always need extra attention. It always made sense to me that Michael was different.
And yet, once I started to attend University just four years ago, I was once asked: “what’s Down Syndrome?”. I couldn't believe that someone attending such a high-level institution had no idea what my brother had. That they would have no idea what would result from having an extra chromosome.
Blogging for Down Syndrome Awareness
To this day I'm forever grateful for that experience. It made me realize that something needed to change. And with that, I created our blog, Beyond the Waves. I'm incredibly humbled and appreciative by all of the support that we have received, and even more grateful for the additional blogger families we’ve met on this journey.
But our work isn’t done yet.
These past few months I’ve realized how much the Down Syndrome community needs scientific research. Just 30 years ago, the life expectancy for a DS individual was about 25 years. This number has now increased to 60 years today, thanks to advances in research.
Did you know that individuals who have Down Syndrome are protected from coronary artery disease, hypertension, and most solid tumors, including breast, colon, and skin cancers? Not to forget that Down Syndrome comes with many comorbidities, including congenital heart disease, hypothyroidism, celiac disease, autism, among others. What’s so special about these comorbidities, is that studying the connection between them and Down Syndrome can not only alleviate some of these symptoms in DS individuals but find answers in treating them in the general population.
Take leukemia, for example. Individuals with Down Syndrome have a higher occurrence of leukemia. And yet, scientists have found that individuals who do not have DS have an amplification of a small fragment of DNA on the 21st chromosome. Studying this connection could lead to better treatment not only in Down Syndrome but the general population as well.
Funding for Down Syndrome
We still have lots of work to do. Even though Down Syndrome is the most common chromosomal condition, up until this past Oct. 1st, it was the least funded genetic condition for scientific research. Just over 3 weeks ago, the NIH granted an additional $22.2 million in research for Down Syndrome (yet DS research only received $35 million in 2017). However, we need to continue this momentum and find more answers to continue helping our individuals with Down Syndrome live more fulfilled healthier lives.
Julia created the blog after her first year of college at UC San Diego, as she realized that there needed to be more Down Syndrome awareness. She not only to shares the story of her life while living with Michael, but to uses the blog as a means of sharing the stories of other special needs families as well. All in order to help educate the community of how rewarding life can be while living with a disability (or with someone who has one).
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