Lucca McLendon
Lucca first became a patient at Wolfson Children’s when he was just a couple of days old. He had highly dangerous levels of bilirubin (jaundice) and had to receive bilirubin treatments for a week before his levels got down to a safe number.
Born with hypotonia (very low muscle tone), Lucca was unable to breastfeed properly and was severely dehydrated when we were admitted. During his stay the nurses decided to try supplementing with formula, and quickly found out Lucca had severe reflux as well.
Over the next couple years, Lucca had multiple tests including Upper GI’s, Endoscopy’s, and Gastric Emptying Studies,all performed at Wolfson Children’s, to try to find out why Lucca’s reflux was not getting any better after being on the strongest medicines for a baby his age.
At a year old Lucca still was unable to sit up properly and we were beginning to notice other “signs” that Lucca wasn’t developing at the rate he should be for a 1 year old. When Lucca was 18 months old, right after he started physical therapy at Wolfson, we got in to see a Neurologist who did bloodwork and an MRI, showing his brain wasn’t developed completely and his chromosomes were abnormal.
His family found out shortly before Lucca turned 2 that he has a deletion on his 22nd chromosome, which is called Phelan-McDermid Syndrome. His syndrome affects his speech, cognitive, developmental and physical abilites. 99% of children with his syndrome are non-verbal, and most of them do not walk at all. They are severely mentally delayed and all have severely low muscle tone. Which we now know is why his reflux is and always will be a part of his life. This is a very rare syndrome, only around 600 people are affected by it in the entire world. Lucca is the only child in Jacksonville with this syndrome, so it makes it very difficult to know what type of therapies to try to get because no doctors in Jacksonville have ever heard of, or know anything about his syndrome.
His parents have to tell the doctors what it affects. Lucca is receiving Physical, Speech and Occupational Therapies once a week, and has made much progress over the 2 years of his life. We have high hopes that he will only continue to progress. He uses AFO’s during therapy to help stabilize his ankles which roll in, and received a wheelchair through Wolfson Children’s to help stabilize his trunk and back so he will be able to grow properly. We know that our God is a healing God and that he is going to use Lucca in a stong way to help others out there in some way or another!
