Luling boy struggles with brain disease
Misdiagnosed as having ADHD
Alex Oxford, 8, is still active in sports despite his recent diagnoses.
Alex, the son of Gene and Carissa Oxford of Luling, did not respond to the stimulants often given to children suffering from ADHD and after receiving treatment for the disorder for a few years the Oxfords decided to stop giving Alex the medication.
"We decided to stop the ADHD meds because they werenít working and then it happened," Gene said.
In early April Alex began to show signs of illness.
"Alex vomited and we went to Regional Hospital in Kenner and they checked him for the flu and it was negative, but they felt like it was still the flu," Gene said. "Two weeks later he came home from school and he was vomiting and he kind of went into a glazed over look and had a seizure. So we went to Childrenís Hospital."
Gene said a doctor at the hospital thought Alex might have adrenoleukodystrophy (ALD), a brain disease that affects one in 18,000 male children between the ages of four and ten. ALD is a genetic disease that causes the myelin sheathing that protects nerves to wear away resulting in dysfunction in the brain and central nervous system and ultimately death.
After running a test the doctorís suspicions were confirmed. The Oxfordís were given two choices, they could let the illness run its course, which would ultimately lead to certain death for Alex within a few years, or they could try an experimental therapy that would give him a 50 percent chance of extending his life or even halting the disease.
The Oxfordís decided to do whatever they could do and have been working with doctors at the University of Minnesota to treat Alex.
"Right now heís fine. The last two days he has been getting injections–he went to baseball practice. Today we pretty much went swimming like his normal self," Gene said. "There is nothing wrong with his hearing or his eyes, but there is a slow response time now because of it."
Gene said Alex has undergone a few treatments in preparation for a bone marrow transplant. Similar procedures in other patients have stopped the disease, but those with ALD may get worse before the affects of the disease drop off, if they get better at all.
"The idea is you put the bone marrow in and you build him back up and it will halt the progression," Gene said. "Iíve seen kids similar to Alex and they end up in diapers and a wheelchair and some die and some come back and are strong and live into their twenties."
Alex has matched with a donor, but it is not a 100 percent match. However, Gene said the match is close enough to go ahead with the procedure.
The bone marrow transplant has tentatively been set for early July.
Gene said the misdiagnosis of ADHD that happened to Alex is common for those experiencing the symptoms of ALD.
"Almost every time a kid gets diagnosed with ADHD and then they find out it is ALD and then you have less than two years to live," Gene said. "Now looking back on it weíve probably seen this progress over the past year and didnít realize it. So that is why weíve kind of decided to bring some attention to the misdiagnosis and that one in 18,000 really isnít that rare."
Gene said if they had been able to catch the genetic disorder before it appeared in Alexís brain their chances of stopping the disease would be higher.
"I canít believe they just didnít test for this in the beginning. Everyone should be tested for this," Gene said. "Itís a totally genetic disease. I have two daughters so they should be able test them because it is in the family and before they have kids at least they could know and then you could do something.
"What we found out though is that there is no research money for this and it just gets overlooked because they think everyone will die from it. Itís rare, but itís in one in 18,000 which really isnít that rare."
A number of events throughout the community are being held for Alex, beginning with a swim party at Mimosa Swim Club on June 9, a softball tournament in Des Allemands on June 21, a poker run on June 30 in Bayou Gauche, Luling, Kenner and Harahan and a fishing tournament to be held in Luling.
More information about Alex and the fundraising events can be found on the Alexís Angels Facebook page at http://www.facebook.com/alexsangels2012.
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