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  Residential Services for Medically Fragile Children
Coordination of Complex Home Care Services

In the News >> Newsletter

Spring 2006 Edition
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Evan’s Story

EvanBorn Sept 23, 1995, Evan was reported to be hypotonic upon arrival in the nursery. At 6 months old, it was noticed that he was not developing, in holding his head up or sitting unaided. He started seeing all types of doctors and had all types of tests (ex: MRI, eyes, ears, nose, throat, nerve biopsy, 2 muscle biopsies, EMG, EEG, genetic, blood, urine, metabolic, skin biopsy, etc).

He has been seen by many doctors; neurology specialists, Institute of Basic Research on Staten Island, Children’s Hospital of Atlanta, Orthopedists, and Endocrinologists.

It took 4-1/2 years to get a “probable” diagnosis, since most tests came out “normal”. But after a fresh muscle biopsy in Atlanta, they felt Evan had a Mitochondrial Disease Complex I and IV Oxidative Phosphorylation along with nocturnal seizures, global delayed development, extreme hypotonia and growth hormone deficiency.

There is no treatment or cure for Mitochondrial Disease, just to treat the patient’s symptoms and keep them as healthy as possible.

Evan started with home therapies and attended a group class at LI Infant Development in Merrick, NY. At pre-school age, until 9 years of age, he attended Carman’s Road School in Massapequa, NY.

Evan cannot talk or do anything for himself at all. He used to be able to roll over and pull himself up to a sitting position when laying on his back. But he no longer does either.

He is dependent on others for all daily care, in all aspects of life. He must be fed, carried, dressed, bathed, have his teeth brushed, wears diapers and be given all his medicines. Evan has always been a calm, happy, content, mellow, little boy. He just has gotten much heavier to handle.

In August 2004, we sent Evan to camp, which was the first time away from his family. Evan was hospitalized after camp due to pneumonia. He was intubated for two weeks but when he was taken off the intubation, he was never the same again!!! Evan appeared to be extremely agitated…..It was awful. He looked like a crack baby or worse. He could no longer eat by mouth and a G-tube was inserted.

The doctors at the hospital had no answers!!!

He lived at the hospital from August until late November when he was transferred to a rehab hospital. One good thing was we went to Columbia’s (Parkinson) Movement Disorder doctors. They diagnosed these new symptoms as dystonia. He has been on a new drug called Kemadrin, which does help “most of the time”.

He has returned to eating and drinking by mouth. We use the G-tube to give him medicines if he is asleep. We need your help now, ASAP. After 1-1/2 years Evan was discharged from the hospital at the end of February 2006. We wanted him home!! We have made our garage a bedroom for Evan on our first floor.

For this to work for Evan, we desperately need a handicapped bathroom outside his bedroom, and a wheelchair ramp. As his parents we are committed to taking care of this little boy we love, and keeping our family together and safe. We will need to depend on an LPN during the week from after school until bedtime. If we cannot provide a safe environment for Evan to be cared for, we risk an accident. Plus we risk no LPN being interested in helping us out.

We no longer can carry Evan up 14 stairs, and give him a bath in a regular tub. Our backs will give out and when he is wet and naked he is very slippery. Life could be so much better for all of us if you do realize how much we need the bathroom and ramp.

Thank you, Evan’s Mother

 

During the past few months, ATDC has taken on the challenge of helping Evan with an accessible bedroom, bathroom and wheelchair ramp. We are happy to see Evan home with his family.
Our goal will be to make his home environment as comfortable as possible

 

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