David, son of Nancy, PRN Founder

(First picture is at 6 weeks, second one is 5th grade school picture, last one was taken in February of 2000)

David was born in 1988 and was diagnosed with PRS within minutes of delivery.  He was intubated in the delivery room and flown to a NICU 125 miles from home.  His breathing issues were quite severe, so a trach was placed when he was three days old.   He was fed via NG tube in the NICU for five weeks.  We found a sippy cup, after many trial and errors, and we had to alter it to make it work. 

He came home from the hospital when he was almost three months old.  We had 18 hours per day nursing care during the week and 8 hours per day on the weekend.  He was fed round the clock due to his difficulty gaining weight.  We discovered the Mead Johnson Cleft Palate nurser when he was about five months old and began using it.  The sippy cups got quite messy the older he got.

He had his palate repaired at 14 months and the trach was removed during the same hospitalization.  He was  diagnosed with Stickler Syndrome just prior to his fifth birthday.  Most of his Stickler issues are related to his eyes, he does have some joint involvement.

He has had the following surgeries:   Tracheotomy, ear tubes, palate repair, t-tubes, t-tubes out, trach stoma repair, adenoidectomy, eye muscle repair, loose sphincter pharyngoplasty, pharyngoplasty rework, giant retinal tear repair, a retinal slit repair and a lens implant.He had surgery to remove the lens with the cataract.  They were able to successfully place a lens implant.  We had been avoiding this surgery in fear of what would happen to the retina.  But, his eye pressure was very high and we had no choice.  It turned out very well so far.  

Despite all his struggles, he is a typical young man.  He has grown up in the past years and is now facing decisions about what to do the rest of his life.   

If I can talk him into, I will get an updated picture of him.  :-)

No doubt about it, he is the joy of my life.