Makayla W.
Birth Date - July 27, 2004



Due Date: 4/1/17

Makayla's Story

Makayla was born with kidney issues. She was always delayed but seemed OK otherwise. At age 3, she started preschool and her teacher informed me that Makayla was very delayed and I should have the doctor check her hips. Right away when they watched her walk, they knew something was going on. She was also having extreme blood sugar lows and highs. By age 4, she had over 20 hospital visits for ketoacidosis. At age 5, she was finally seen in the genetics clinic, where they told us she had muscular dystrophy. It was tough to accept. 

She received a wheelchair and it felt like she was able to participate more. For a few years she was very stable; a few minor issues and 2 surgeries unrelated to her disease. Then at age 9, she started losing weight and couldn't eat. We tried every diet that the GI doctor recommended. Nothing helped. She got weaker and weaker and smaller. We got a second opinion, and he did a scope that found her muscles in her stomach and intestines were very weak. She had a reaction to the anesthesia and was hospitalized for 2 weeks. She has never regained the strength and endurance she had before that stay. 

She developed POTS (Postural Orthostatic Tachycardia Syndrome). The genetics doctors diagnosed her with Mitochondrial Disease. She continued to struggle to eat and maintain her weight. After collapsing during a therapy session in January 2016, she was started on TPN (Total Parenteral Nutrition) to help give her a boost. A week on TPN she seemed a lot better and was able to leave the hospital, only to be readmitted 3 days later in near coma state. She was transferred to Riley Hospital for further testing. They found she had zero peristaltic movement through her GI tract. She will be on TPN for her entire life. She is being evaluated by the intestinal transplant team and may receive a new set of intestines.

"I don't think I can thank you enough for this gift. Makayla was completely surprised and had no clue about the quilt until she opened it. She said, 'Oh, I love cats!'"