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Hi, friends!
Thank you for visiting. We have created this page to help centralize information for helping Kayla and her family along this journey. Kayla is 14 years old, as smart as a whip, funny, kind, and wise beyond her years. She loves Jesus with all of her heart. Since she was only a few weeks old she has been fighting devastating illness, having currently having been diagnosed with nearly 25 different diseases, any one of which would be a challenge for most of us all by itself. She suffers from Systemic Mastocytosis, EDS, POTS, epilepsy, common variable immunodeficiency, dysautonomia, gastroparesis, visceroptosis, exercise induced anaphylaxis, gene mutations, blood clotting risks, vasculitis, high blood pressure, and high heart rate, to name just a few. She must use a wheelchair any time she will be out of the house for any length of time. On March 18, 2017, Kayla's body stopped tolerating foods. She is completely dependent on her feeding tube. At this time, her body is only able to tolerate about 700 KCal/day of formula through her feeding tube. Since March, she has lost 31 lbs. Kayla and her family live in the Bay Area, but she must fly to Long Beach in Southern California just about every week for treatment and appointments, and must have day long infusions to boost her immune system every three weeks at home. One of the greatest challenges of having rare diseases is finding doctors able to help test and treat for them. Luckily the majority of her help is housed at TPIRC (a place for Rare Diseases). However, not all specialties are represented there. At this time, it is going to take 3 out of state doctors to hopefully get her body to allow her to eat again. Another challenge of having rare diseases, is the lack of insurance coverage to treat the diseases. In addition to the $52,000 out of pocket expenses DeeDee and Spencer are responsible for, the family is looking at an additional $24,000 for these 3 doctors and travel, combined. Kayla is scheduled with them, starting in mid July, and going through August. |
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