Support Booker's Journey to Home and Health

My name is Darcy Long, I am the mother of 11 children and now blessed to be a grandmother! Shyann, our oldest, married her Prince Charming, Trenton, in 2022 and we’re blessed with the sweetest little baby boy, Booker Lee Scott, this year on August 29th. We may not know the Lords plans, but we trust them. Booker inherited his mom’s gene that causes a rare disease, CCHS with Hirschsprungs. Congenital central hypoventilation syndrome (CCHS) is a rare, potentially life-threatening disorder. It affects automatic body functions, especially breathing. Booker, like Shyann, will need mechanical ventilation for life.

Trenton and Shyann have been traveling back and forth from their home near Keldron, SD, where they lease ground and farm. It is proving to be a great struggle to find a path to get Booker home as there isn’t a Home Medical Equipment Provider willing to service a trached infant where they live…. I’m wanting to raise funds for Trenton and Shyann to continue to be able to travel back and forth without the added financial stress. Lyle and I know how emotionally draining spending countless hours in a hospital just aching to take your sweet baby home. Lyle and I have been through this before, and our little community came together and put together an auction that gathered enough money that Lyle and I were able to be together and just focus on our little girl…. (Lyle couldn’t stand not working, so took whatever day jobs he could where we were and learned a lot of good skills.). The facts of the matter are, Trenton and Shyann need to travel back and forth to Sioux Falls for right now an unknown amount of time, and could possible have to put up a legal battle to try to insist on medical equipment being provided without discrimination based on where they live. If all else fails, they may have to uproot their lives and buy or rent a house closer to town just to get Booker home and make an attempt at a normal life. Any help is greatly appreciated and keep this little family in your thoughts and prayers!

If anyone would like to help in a different manner than go fund me, you’re welcome to contact me through private messenger. LyleNDarcy Long