Jack Albert Whieldon
CCHS - Congenital Central Hypoventilation Syndrome
Jack Albert Whieldon's Bio
Jack Albert Whieldon was born 6 weeks premature on March 3rd of 2017 at Meritus Hospital in Hagerstown. He has been struggling to stay alive and is diagnosed with CCHS and transferred to Johns Hopkins where he was given a tracheostomy and a G tube (gastric feeding tube). He spent 3 more months at Mt. Washington Pediatrics and was discharged to go home at the age of 6 months.
CCHS is a congenital disorder that prevents him from breathing on his own for the rest of his life and is not reversible or curable. He must remain on a ventilator when he sleeps or he will stop breathing and die. Until he gets older, usually at the age of 2yo he will be able to be off the vent during the day only when he is awake and alert. Jack requires 24 hour care. Someone must be next to him at all times. This means that we have to split up our time to day and night shift to watch him. If we both fell asleep he could die in his sleep and it would be too late by the time we find out. We have 12 hour night nurse that cover our nights but sometimes they don’t show up or something happens where we have to stay up at night.
If you want to understand what CCHS is in detail here is a link. https://rarediseases.org/rare-diseases/congenital-central-hypoventilation-syndrome/
It’s an incredibly rare disorder, only about 4,000 people worldwide have this. Fortunately he has improved and is growing stronger but the toll on LiDonna (Lily), my wife, and I have become overwhelmingly bleak and it has become increasingly difficult financially.
There are times when I don’t know how I can pay for electricity or lot rent for our mobile home. And we are now facing bankruptcy. We are not eligible for food stamps as the state looks at my adjusted gross income and not my net income. Lily is unable to work as she has to watch him. I have had to cut the hours I work to help care for Lily. She has been battling with postpartum depression and crippling anxiety about not being able to have our newborn home since he was born.
We are hoping for help so that we can care for Jack.