With fair care, appropriate interventions, and the right treatment, amazing things can happen!
"Look at me now PCH! I guess I wasn't at the end of my rope after all, huh? I really wish I could show you guys how tough I am, and how well I'm doing now. How's this for
'QuAlItY oF LifE?' I don't know about you, but my life is filled with so much fun, and people that love me. I'm nearly walking all by my self. I'm starting to like food. And, guess what? I'm off ventilator almost all day!
Thank you to Boston for believing in me and valuing
my life enough to save it. 365 days ago I was discharged from the hospital, after being inpatient for 5 months, at 3 different hospitals, in 3 different states, including one 16-hour heart and airway surgery. Because of Boston Children’s, I am able to breathe so much better.
I have not been inpatient in one whole year! This is an incredibly huge accomplishment for kids like me! It's been wonderful being home for a solid year, where I can enjoying all the holidays and memory making. My family's praying for another uneventful year at home.
Thank you to everyone who's walked along side us during this journey, offering up prayers, support, and advice. When people say it takes a village to raise a child, that is especially true for children with complex needs. My family looks forward to my future, praying that God
will continue to bless me with safety and health, for years and years to come.
To celebrate, we had a big Halloween party with our closest friends, family, and my amazing nurse. There was rock painting, cookie and cupcake decorating, nightmare before Christmas bingo,
eyeball ping pong, homemade pizza (baked in an outdoor pizza oven), and lots of love and laughter."
Please read the response to my letter from unnamed doctor & you’ll see why we need to keep writing letters when our children were labeled & given no hope.