Bailey's Hope
Benefit Motorcycle, Car, Jeep, & Truck Ride
Harry's Place Elkin, NC
September 7th 10:00 am 2013
Bailey's Story
Bailey was diagnosed in May 2011 with Adrenoleukodystrophy. This is a rare terminal brain disease. There is NO cure. The symptoms begin with behavioral problems and gradually moves into deafness, blindness, seizures, loss of muscle control, and progressive dementia. Th
is disease usually leads to death within 2-5 years from the diagnosis. The demyelination causes the brain to be destroyed. If a diagnosis is done within the early stages; a bone marrow transplant can stop the progression, sadly it cannot undo the damage that has been done. Bailey received a Bone Marrow Transplant on September 2nd, 2011. He stayed in the Mayo Clinic a long with his mother Miranda, for the next three months. He endured numerous test, MRI's, blood work, and multiple seizures while there. He came home in late December 2011, only to return for another 3 month stay when his skin began rejecting the new bone marrow. During this 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. In August 2012 Bailey was diagnosed with Avascular Necrosis. This condition results from a significant loss of blood supply to an area of bone tissue. This can effect the hips, knee, spine, shoulder, and wrist. Bailey's areas most affected are both of his knee's 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. In February 2013 the doctors agreed to do surgery to stop his bones from collapsing. Osteochondral Allografting is a procedure that requires a cadaver match to size. The doctor will take the femur bone from a donor and construct two new knee caps and replace the the rest of the diseased ridden bone. 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 3 months of intense physical therapy. For the first three weeks after the surgery he will use a continous motion passive machine. This machine cost upwards of $5500.00. During this time Bailey also found out he had Addison's disease. This is a disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison's disease, you adrenal glands produce too little cortisol, and often insufficient levels of aldosterone as well. Bailey must take hormone replacements to mimic his bodies natural chemistry. Bailey also must return to the Mayo Clinic every 3 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. The Grays choose to drive the 18 hours because flying is so expensive, and airplanes are not handicap friendly. His mother, Miranda has worked at Walmart for 23 years. She works 40 plus hours a week, while Bailey is cared for by his sister and his "Nonas." . She never takes a sick day or plays hooky. She works as hard as she can to be a good mother and provide for her kids. Bailey's father Jason also works and helps out. Bailey uses an electric wheel chair at school and requires help 24/7. His twin sister Macy has taken on the responsibility of a parent. She makes sure he has his medicine and is solely responsible for helping him at school. Macy at 12 knows when and where to give Bailey the medication to stop his seizures. She doesn't panic when she has to call 911 to have her brother rushed to hospital because he had a seizure and isn't breathing. Could you imagine? 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. 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 he needs your prayers. GOD is the great physician and only he can help heal Bailey's body. We are simply aiding in the process. THANKS for taking the time to read this, and GOD BLESS. "Let the little children come to me, and do not hinder them, for the kingdom of GOD belongs to such as these." ~ Mark 10:14
For more information on the ride or how to donate please visit Bailey's Hope on Facebook, email [email protected] or [email protected]
All donations are tax deducible. To make a donation simply visit your local Yadkin Bank: Bailey Gray
