Our Family's Story
It’s hard to believe that our story started almost 10 years ago at this point. If you would’ve asked me where I would be in 10 years with my daughter Katelyn, this is not the answer I would have given. I am the mother of five children; my last child, Katelyn, was born at 33 weeks, weighing in at 2 lbs. 15 oz. We spent a month and a half in the NICU. During that time, we had a nurse that came along and said something is just not right. She asked me if she could do genetic testing. I agreed and genetics were called in. Almost immediately, my daughter was diagnosed with Russell Silver Syndrome. RSS is a rare genetic disorder affecting approximately 1 in 100,000. My daughter’s first year of life we were constantly at different doctors. Because it was so rare, often I would get the response from doctors that they had heard of that. I always describe it as imagine going to the doctors after you had a heart attack and they looked at you and said they had heard of it. Hearing it, simply was not enough to know how to treat it. We almost lost our daughter her first year of life.
On one of our last hospital visits, I had remembered someone talking to us about the MAGIC Foundation. The MAGIC Foundation deals with rare genetic disorders, not just RSS. They were able to put us in connection with one of the top three doctors in the world on RSS. We met with this doctor, and our daughter’s health turned completely around in 6 months. We went from having a child that we never thought was going to live, to never thought was going to walk, now she is a thriving almost 10-year-old with a lot of spunk. Words cannot describe the support and resources MAGIC has provided, regardless of where our finances might have been.
It is an organization that was started by a couple of moms looking for answers just like me. They have fought to change laws, they are advocates for insurance battles, and they are also a shoulder to cry on when you need it. We refer to each other as our MAGIC family. Had in not been for the many families that paved the way for us, I don’t think our daughter would be here today. This is our chance to give back. We are in a great place and have decided to organize a 5K run/ walk, including a 1 mile children’s fun run. Please consider participating and supporting our first annual run. Hope to see you at the MAGIC Growth Sprint 2018!