We Could Use Your Help

We Could Use Your Help

My name is Maria Smith. I would like to introduce to my son Clayton Emory Smith IV. Back in 1991 when he was born my husband and I were the happiest parents in the world. In the preceding years our five-year old son Wolfram Ronald died of a rare case of muscular dystrophy (which – with all the knowledge we have today – was, most probably, adrenoleukodystrophy). Wolfram also had a brother and sister: Clayton III and Sosha who died in a car accident at the age of 16 and 14.

Clayton IV was our miracle baby who gave us a chance to have the joy of parenthood again.

Several years ago Clayton started developing unexplained symptoms of muscle weakness, fatigue, and difficulty walking. He had always been active and even achieved the rank of Eagle Scout while in the BSA. We were at a loss. Months and months of appointments with various medical specialists provided no answer to his deteriorating health. We went through the most elaborate procedures of muscle and nerve biopsies, sessions of IVig, steroid treatments, MRIs, etc.

Clayton was once again admitted to hospital for another procedure (plasmaferesis), which had no effect, but while there thanks to a team of young talented neurologists at UF Health who demanded more tests we finally got the proper diagnosis – rapidly progressive adrenomyeloneuropathy (AMN) with cerebral involvement.

This extremely rare condition is caused by a gene mutation located in the X-chromosome which, in turn, causes accumulation of very-long chain fatty acids throughout the body. Cerebral involvement is an inflammatory reaction in the cerebral white matter. The research on his rare condition is very scarce.

The only hospital in the USA which works with patients like Clayton is Kennedy Krieger Institute at John Hopkins Hospital in Baltimore, Maryland.

A few weeks ago Clayton traveled to Johns Hopkins for a consultation with KKI specialists and a bone marrow transplant was recommended as the only option to stop the degenerative processes in his brain. After successful surgery and following a lengthy recuperation all brain deterioration will be halted.

Without surgery it is only a matter of time until his brain function declines to a vegetative state. The procedure is very involved and dangerous and the recovery is prolonged and not free of complications. However, we desperately need help to cover travel expenses and accommodations on the long road to recovery as it will be months long and take place in Maryland, far away from Jacksonville.

We would appreciate any help and support and want to thank, in advance, all who took the time to learn our story.