Jonah, a 9 year old boy with chronic illnesses which significantly affect his life needs our help. He was born with Cystic Fibrosis. In addition, Jonah has no colonic motility and he has an illeastomy. Jonah also had a Pancreatectomy/Auto Islet cell transplant, and has been diagnosed with Mitochondrial disease, or Fatty Acid Oxidation Disorder.

Jonah has had many hospitalizations due to his medical conditions. He had an eight week hospital stay, which he left with a permanent ostomy (bag for stool collection). He has also had multiple sinus surgeries, and surgeries for port placements and feeding tubes. Jonah also had chronic pancreatitis which put him in constant pain. He eventually had a pancreatectomy/auto islet cell transplant, which was a 12 hour surgery completed in 2005.

Jonah’s illnesses cause him to have periods of extreme fatigue. He has been in and out of the hospital several times this year due to episodes of severe dehydration and pulmonary issues. Jonah is unable to play organized sports anymore, which has been extremely difficult for him because he used to love to play football and basketball. Jonah still likes to play outside and do as much as he is able to. He is forced to miss many days of school, and is now starting a home school program in order to meet his medical needs. 

All of these illnesses make it necessary for Jonah to be on daily medications and treatments. He requires an unusually high amount of calories and hydration. Jonah also uses ostomy supplies and needs daily replacements of pajamas and bedding due to ostomy breakage and severe soiling of items which often need to be discarded. Jonah drinks 90-120 Gatorade bottles per month. He eats regular meals, 2-4 snacks per day and 2 extra Healthy Choice meals per day. Jonah’s family needs has requested us to raise special items for him, including Gatorade, packaged snacks, healthy choice meals, apple juice, sheets, pillows, bedding, pajamas, gallon Ziploc baggies and garbage bags.