Ryan's Story

We adopted Ryan when he was six years old, before he had a trach or vent.  He did have many different abilities like my son, Kyle, whom we had already adopted.  I love giving a family to a child that no one wants, and watching them get enjoyment out of the little things we take for granted.


I remember telling my husband that I didn't think I could adopt a child with a trach or vent, because I knew nothing about them.  God had other plans!  We took Ryan to the children's hospital for surgery, and he went into respiratory arrest, was intubated, and admitted to the PICU.  He was then trached for laryngomalacia.  We miss Ryan's cute little laugh and his cry, but he is healthier with the trach.


Things went okay for the next couple of years, but Ryan's need for O2 kept increasing.  Another sleep study was done, and he stopped breathing 504 times - no wonder he couldn't sleep!  Since then, Ryan has used a ventilator whenever he is asleep (night time and naps.) Sometimes the vent is a pain and annoying, but it is also his best friend. Ryan's need for O2 went way down, and he sleeps much better on the vent.  He also had a laryngotracheal separation to stop his chronic aspiration, and has been much healthier since then.


Ryan was born with Bilateral Open Lipped Schizencephaly.  He also has CP, dystonia, developmental delays, and Lennox-Gastaut Syndrome (a severe seizure disorder.)  He is also non-verbal, blind, has a G and J-tube, and is 100% J-tube fed.  But, please remember to look past Ryan's disabilities, and see his huge smile and what a happy boy he is everyday!

Deborah's Story

Hi!  I'm a young adult with CCHS (Congenital Central Hypoventilation Syndrome.) Normally, you don't have to think about breathing - the autonomic center in your brain tells your body to breathe even when you are asleep.  In kids born with CCHS, however, something goes wrong with this center, and they "forget" to breathe, especially while asleep. CCHS used to be called Ondine's Curse (from the German myth about Ondine, a water nymph who curses her unfaithful husband to cease breathing if he should ever fall asleep again.)  I have a trach and am on an LTV ventilator 24/7.  I also have a J-tube for continuous feeds, and use a wheelchair to help me get around.  I take several medications every day, and get weekly SQ IgG infusions of Hizentra.  I see a number of specialists (pulmonary, ENT, neurology, and cardiology, etc.) to help keep me healthy, and I also work with some terrific therapists in occupational, physical, and speech therapy.