I am so proud to say that I am on the board of a new organization: Jayla’s Wings.
Ezzy and I first met Jayla and her mother Jenn at our Children’s Hospital. We bonded over tubie huggers and feeding tubes. And we carried on some good conversation until Jayla decided the time for talking was over…with a great big sign for “all done”…she was ready to go.
But we stayed in touch, as I do with so many of my friends these days, through facebook. Through a quick “hi” here, a “like” on a status that only a Special Needs parent would get, a photo there Jayla and Jenn became a part of my life. They were always doing something fun and providing photographic evidence of that fun. In August Jenn and Jayla posted photos of the dress Jayla was to wear in her first pageant.
Then one morning I read the sad news that Jayla had lost her battle. I knew she had been unwell and in the hospital. I knew that her disorder, Cockayne Syndrome, had a life-expectancy of 4-6 years.
But I was still in shock at how the world would be without such a lovely, sweet, funny girl in it.
Recently Jenn posted about her intentions to start a foundation in Jayla’s name. She wanted to provide funding to help other families with children who have debilitating diagnoses do “make memories” with their children. As you likely know by now from reading my blog, children who are medically complex can be difficult to travel with; they may need extra hands (like a nurse) and require a lot of planning to get out of the house. Doing a trip to American Girls, for instance, with such a child can be overwhelming. Jayla’s Wings will help in alleviating some of the financial burden associated with these kinds of activities, in order to lower the barrier for families of medically fragile children to engage in fun activities as a family.
Please learn more about Jayla’s Wings on our website and “like” us on facebook! You can help Jayla’s Wings by participating in the online auction starting on the 25th of this month on our facebook page. Visit the website to apply for assistance!