The inaugural ALD benefit ride on behalf of Bailey Gray will take place on September 7 at 10 a.m., according to event organizers.
Bailey Gray, an Elkin Middle School student, was diagnosed in May 2011 with Adrenoleukodystrophy, according to his family.
The rare and terminal brain disease has no cure.
Symptoms of the disease include behavioral problems, deafness, blindness, seizures, loss of muscle control, and progressive dementia.
According to the National Institute for Health, the disease usually leads to death within two-five years from the diagnosis.
With a diagnosis is done within the early stages, a bone marrow transplant can stop its progression.
Bailey received a bone marrow transplant on September 2nd, 2011. Bailey had the procedure in the Mayo Clinic, a not-for-profit medical practice and medical research group based in Rochester, Minn.
“He was in the clinic for a long time, like three months,” said Randee Summers of Bailey’s Hope.
With Bailey’s mother Miranda by his side, Bailey endured numerous test, MRI’s, blood work, and multiple seizures while there.
Bailey arrived back in Elkin in December of 2011, only to return for another three-month stay when his skin began rejecting the new bone marrow.
“During the return visit time Bailey was given numerous medications and UV light treatments to help his body adjust. The medicines were so powerful that they ravaged his bones depriving them of blood,” said Summers.
In August 2012 Bailey was diagnosed with Avascular Necrosis. The condition resulted from a significant loss of blood supply to an area of bone tissue.
Avascular Necrosis affects the hips, knee, spine, shoulder and wrist.
“Bailey’s areas most affected are both of his knees and femur bone. He must use a wheel chair and a walker to move around. If Bailey is out of his wheel chair and falls, his fragile bones could splinter and put him in a wheel chair for the rest of his life,” said Summers.
In February 2013, doctors agreed to do surgery to stop Bailey’s bones from collapsing. The surgery has yet to be approved by his insurance company.
The surgery, Osteochondral Allografting, is a procedure that requires a cadaver match to size. Doctors take the femur bone from a donor and construct two new knee caps and replace the diseased portion of the bone.
According to Summers, Bailey was placed on the donor list in March 2013, but there has not been a match found so far.
“If the surgery is successful and he regains use of his legs, he is facing three months of intense physical therapy,” said Summers.
Matters have gotten worse for Bailey
Despite all of the medical tribulations, Bailey also learned he had Addison’s disease. The disorder occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands.
In Addison’s disease, adrenal glands produce too little cortisol, and often insufficient levels of aldosterone.
Bailey must now take hormone replacements to mimic his body’s natural chemistry.
Bailey must return to the Mayo Clinic in Minnesota every three months from now on for testing, MRI’s, blood work and other forms of therapy. His procedures are covered, but none of his living or travel expenses are. The Grays choose to drive the 18 hours because flying is so expensive, and they say “airplanes are not handicap friendly.”
Bailey’s mother, Miranda, has worked at Walmart for almost 23 years. She works 40 plus hours a week. His father, Jason also works and cares for him too.
“We are striving to raise enough money to help out with medical bills, and pay for his mother and sister to stay in Minnesota when Bailey has his surgery,” said Summers.
“This child needs your help to obtain some glimpse of a normal life. Anything that you could provide would help out this very deserving little boy. But most of all Bailey needs your prayers. GOD is the great physician and only he can help heal Bailey’s body. We are simply aiding in the process,” said Summers.
For the September 7 fundraiser, single motorcycle riders are $20. Double riders are $25. Cars, jeeps, and trucks are $10 per vehicle.
The ride begins at 11 a.m. at Harry’s Place in Elkin.
The route will proceed from Harry’s Place to The Depot in Dobson, Coopers Sports Bar in Pilot Mountain, Freeborne’s in Laurel Springs, then back to Dodge City for the finale.
The community may also make a donation at Yadkin Bank in Elkin to Bailey Gray.
Baily’s Hope organizers have also stated that for inclement weather a rain date of September 14 has been scheduled.
If you would like your business to sponsor this event you can make a check out to Bailey’s Hope. It is asked for you to mail the checks to: Bailey’s Hope ℅ Randee Summers - 2394 Zephyr Mtn Park Rd. State Road NC 28676
Reach Anthony Gonzalez at 336-835-1513 or email firstname.lastname@example.org.