Ensure Malachi's Continued Care and Guardianship

My name is Mark Hendley. My wife Sherry and I are trying to obtain Guardianship of our son Malachi. Malachi was born with a rare disease called Nonketotic Hyperglycinemia. A disorder characterized by abnormally high levels of a molecule called glycine in the body. The excess glycine builds up in tissues and organs, particularly the brain. Affected individuals have serious neurological problems and a short life expectancy. Malachi was given a life expectancy of 2 years; he is now 18 by God's favor, Grace and Mercy.

As a result of this disease, Malachi is Medically complex, Global developmental delayed, has Seizure disorder, Respiratory issues, Quadriplegic Cerebral Palsy, Flexion contracture, Bowel and bladder incontinence and other diagnoses. Malachi has had numerous surgeries (Spinal fusion surgery twice, Total Hip replacement, Gastric Bypass surgery, Orthognathic surgery, Tracheotomy surgery, Cholecystectomy surgery, Gastronomy surgery just to name a few). Malachi's hospital stays have ranged from a few weeks to months at a time. Malachi requires 24 hour care. He uses oxygen, a ventilator to keep his (C02) levels stabilized. Malachi uses a enteral feeding pump, (HFCWO) Therapy, Nebulizer treatments, Cough assist (MI-E), an Aspirator, Hospital bed and other equipment used for his care. A wheelchair is used to transport him. Our van is not wheelchair accessible, we physically pick him up to place him into the van.

Even though these 18 years have been challenging our faith in God and our love for Malachi has helped us persevere. Malachi has never recieve any financial assistance! As a public school teacher I make to much money LOL. We are currently paying for his medicad and I pay for insurance through my job. He takes 12+ different medications. Without both insurance his medications would be unaffordable. Even with both insurances we still have co-pays.

We have never complained or asked for financial help for Malachi. Although we have taken care of him for 18 years, we now need Guardianship to continue taking care of him. Due to State Laws Malachi is 18 years old and is legally classified as an adult. We as his biological parents have to obtain Guardianship in order to make any decisions on on his behalf. He is transitioning to adult doctors and they won't provide any care without the Guardianship Documents. The State Laws prohibits Malachi from being treated by some of his pediatric doctors because he is classified as an adult. There are some specialists that will provide medical care for him until age 20; but if he requires any type of surgery they can not perform it. If hospitalization is necessary, he can no longer be admitted to the children's hospital. Guardianship of our son is something we can not avoid and we have to have.

Making the decision to do a Go Fund Me was a struggle. In the state of Florida you cannot obtain Guardianship without an attorney. We are asking for your help for Malachi. This Go Fund Me is to help us with the cost of obtaining a lawyer and court cost to get Guardianship. We will appreciate any financial assistance. Thank you in advance for your support.