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Posted: 09/19/12

Capac boys receive wishes
as they battle XLP

by CHRIS GRAY
Observer Staff Writer

      The road to recovery for three Capac boys suffering from a rare disease is long and grueling, but it's also marked with happiness and hope.
       Thomas and Hunter Tyson and their cousin, Jeremiah Mardlin, will receive bone marrow transplants at University of Michigan facilities in Ann Arbor for X-linked Lymphoproliferative Disease (XLP).
       Along the way, though, the non-profit Rainbow Connection has agreed to fulfill their wishes as they undergo the intense treatments.
       Nearly a year-and-a-half ago, Thomas, 12, Hunter, 8, and Mardlin, 14, were diagnosed with XLP, a genetic disorder that mainly affects males. It is so rare that it affects less than one child out of a million.
       XLP impacts the immune system and blood-forming cells, meaning those affected have a tough time fighting off infections. Erin Tyson, mother of Hunter and Thomas, said because of this they must make monthly visits to the doctor.
       "Any fever is always a rush around the house, calling the doctors and taking them in to make sure it's not something serious that can eventually be deadly to them," Tyson said.
       The worst infection is the Epstein-Barr virus<commonly known as "mono." When infected, the body of someone with XLP has a response that results in the destruction of organs and bone marrow cells.
       Of those affected by XLP, 75 percent die before the age of 10.
       While Thomas has avoided mono, Hunter has been infected, causing him to wear a mask at all times. Tyson said, though, that their doctors consider them healthy enough to receive a bone marrow transplant. Thomas has his transplant scheduled at the end of October in Ann Arbor, while Hunter will receive his next year.
       The process is a 100-day treatment. Before the transplant begins, the recipient's immune system has to be destroyed with radiation or chemotherapy.
       "They won't do two children at once, it becomes too hard to care for them at one time," Tyson said.
       Tyson's sister, Shannon Mardlin, is going through the process with her son, Jeremiah. Mardlin said he had his transplant on Aug. 31 and has to stay in an apartment near the hospital in Ann Arbor should complications arise.
       "Now that he is on the healing end and getting better he has done really well," Mardlin said.

       Wish fulfillment

       Before the Tyson boys receive their treatments, the Rainbow Connection is working to make sure they first receive some granted wishes.
       Susan DeMil, a real estate agent from Capac, has held fundraisers for the Rainbow Connection ever since her daughter recovered from non-Hodgkin's lymphoma 12 years ago.
       She said upon hearing about Hunter and Thomas, she worked it out to hold fundraisers to have their wishes fulfilled.
       "You can imagine how much these illnesses level these kids and parents," she said.
       Thomas chose to go to Disney World, where he and his family will stay at a special resort. They will receive passes for all parks and money for souvenirs.
       "To know it'll be a whole week where the family can go and have fun and to not have to think about the what ifs and what is going on is just amazing," Tyson said.
       Thomas expressed his gratitude for everything the Rainbow Connection has done.
       "I can't wait to go to Disney," he said.
       Mardlin said the Rainbow Connection has agreed to meet with the family and grant a wish once Jeremiah is released. He is considering a trip to Disney.
       DeMil has coordinated fundraiser events for this weekend that will benefit Hunter. A horse walk will be held at 1 p.m. Sept. 22, while a spaghetti dinner will be held 3 p.m. on Sept. 23.
       Each event will be held at the Leaning Tree Golf Club in Wales.