- At 3 weeks old, Elijah was diagnosed with a rare genetic disorder called PKU (Phenylketonuria) through the new born screening tests (heel prick).
- PKU is the inability to breakdown the amino acid phenylalanine in protein. To treat it patients must remain on a low protein diet all of their life.
- If PKU goes untreated, the phenylalanine builds up like a toxin in the brain and causes severe developmental disabilities.
- We work very closely with Eli’s geneticist Dr. Bedoyan and his nutritionist Heidi Reilly at Rainbow to ensure his phenylalanine level remains at a safe level.
- Eli started kindergarten this year, he loves it.
- He played flag football again over the summer, and will be playing basketball in the new year.
- We couldn’t be more grateful for all the treatment and knowledge we’ve received from Dr. Bedoyan, Heidi, and the rest of the Rainbow staff.
Rainbow Babies & Children’s Hospital is so important to patients and families of Northeast Ohio. Make a donation by calling the Holiday Lights at Victory Park phone bank at 216-983-5437 or text us at 51555. Make an online donation here.