At age 11, Walbridge resident Craig Burtch was diagnosed with multiple cavernous angiomas, a congenital abnormality that causes brain hemorrhaging due to a lesion in the brain.
"He had his first 'bleed' at 11 and he has had 10 bleeds since, with three brain surgeries," said Burtch's mother, Linda Hamilton. "Some of the bleeds were large enough to require three brain surgeries, and we traveled as far as Gainesville, Fla., and Phoenix for those surgeries."
In 2006, Burtch had two bleeds in the brain stem and had to be put on high doses of steroids to combat the swelling within the brain stem. Doctors now think that the high doses of steroids may be the cause of a bone disease called avascular necrosis, or AVN.
Burtch, 26, has contracted AVN, which is a disease resulting from the temporary or permanent loss of the blood supply to an area of bone. Without blood, bone tissue will die and the bone collapses.
"We aren't sure when the symptoms first started with the AVN," Hamilton said. "We assumed his aches and pains were from injuries from sports."
Burtch attended Lake High School but, because of his condition, he never graduated with his senior class.
"I had to miss a lot of school due to the brain surgeries," he said, "and I would have been two credits shy of graduating. So, I got my GED."
By the time Burtch's AVN was diagnosed, it was already advanced. By October 2007, his left hip had collapsed and he underwent a total hip replacement in May 2008. Core decompressions with bone grafting have since been done on his right hip, both knees and his right shoulder in an attempt to save the joints.
Burtch is currently waiting for a match from a tissue donor for his left shoulder, which is in need of a bone transplant. The transplant will be performed at Cleveland Clinic.
"The doctor in Cleveland said they are currently doing transplants on the knees with good results and are hoping that by transplanting the shoulder they will see similar results," Hamilton said. "They just don't have much research on transplanting the shoulder."
Pain has been a big problem. Burtch is unable to perform everyday activities without pain medication.
"I feel pain in my left arm from my shoulder to my wrist, and sometimes two of my fingers tingle," Burtch said. "Some days are better than others, but the pain can be really bad if it rains or if it's cold. The pain seems to get worse by the day, but I try to do things in moderation and very carefully. Picking up my 15-month-old son is tough, and moving my shoulder around at shoulder height is almost unbearable."
Burtch is currently seeing several doctors at Cleveland Clinic.
"One doctor studies metabolic bone disease and he is working him up to determine if there is an underlying cause for this that hasn't yet been found," Hamilton said. "He has osteopenia (low bone mineral density) and will have to start Reclast treatments yearly once he's through with his surgeries."
Burtch, who is also dealing with intermittent atrial fibrillation, said he is trying to cope as best he can.
"It is hard not only for himself, but also for his family," Hamilton said. "We are so tired of doctor visits, ER visits and surgeries. It is very difficult as a parent to watch him go through this over and over and there's nothing I can do to fix it. It's difficult for him to watch all his friends graduating from college, getting good jobs, getting married and he's still living at home with life on hold.
"We are praying these surgeries are successful and we look forward to the day when we can finally put this behind us."
Through her son's battle with AVN, Hamilton and her family have become more aware of the need for tissue donation, which includes donating skin, tendons, ligaments and bone.
Community Tissue Service, located at 2736 N. Holland-Sylvania Rd., is a local organization that deals with tissue donation. Reg Dawson, the director of the facility, is very familiar with Burtch's need for a matching tissue donor.
"They are looking for someone with the same characteristics, size and age and things like that," Dawson said. "There are things you have to line up with, like the size of the donor and the recipient. That has a lot to do with it.
"We are always looking for someone who, at the time of their death, was relatively healthy. (Tissue donation) is all dependent on the circumstances when they do pass away. You wouldn't want to put a bone of a boy who was 9 into the body of a man who is 26 years old. Is there any infection going on, or was there any trauma? Surgeons like to have young (tissue) grafts from people who have passed away, (preferably) between 18-35 years of age."
Community Tissue Service deals with tissue and cornea donation after someone passes away.
"If they've suggested donation or the family decides they would like them to be a donor, we recover that bone," Dawson said. "We can take a larger bone, like a thigh bone, and make it into smaller grafts. With organ donation, one lung can go to one person and the other lung can go to another person. With tissue donation, we can help the lives of 40-50 people, depending on their age and medical condition."
Dawson stressed that families should be made aware if a family member has requested to donate tissue.
"If you want to become a donor at the time of your death, or whatever your choice is, make sure your family knows," Dawson said. "We have a lot of people say yes, I want to be a donor, and the family says they never knew anything about it. If families still refuse, we respect their wishes. We want people to talk to their family and know what their decision is."
Community Tissue Service receives about 225 donors a year in Northwest Ohio, according to Dawson.
"There's always a need for tendons and ligaments," he said. "The skin we recover is used for burn patients. Corneas are used here in Northwest Ohio as well as throughout the United States. Surgeons here in Northwest Ohio call us on a daily basis."
For more information on tissue or cornea donation, call Community Tissue Service at 419-536-4924 or visit www.communitytissue.org.