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Connor Tinnin

Michigan

My Story

Connor is super smart,he graduated in the top 20 of a very large High School.Connor received a full academic scholarship from University of Michigan, he graduated in four years with a degree in English and Japanese language.Connor completed two semesters in Hikone Japan, on his own.

Connors main interest is Art and he is a talented artist. I hope his life and accomplishments will give hope to others who have SIOD.

How old was your child when they were diagnosed with SIOD? Connor was six when he was diagnosed.

What were your thoughts when you FIRST learned that your child was diagnosed with SIOD? At the time,1997, there was not a lot of information on SIOD and no other parents to talk to. Connor was so ill at the time we were just focused on his survival. They were planning an immediate bone marrow transplant at the time.

Tell us briefly about the medical complications that have occurred because of SIOD: Bone marrow failure,Renal failure, dwarfism, migraines, TIA, dysplasia, seizures, deafness from meds B-cell lymphoma.

What has your child's treatment plan looked like? Bone marrow transplant 1997,kidney transplant 1998, hips reconstructed at age 12, Legs operated on in 2006 at Johns Hopkins. Scheduled for hip replacement in July 2020 in Delaware.

What challenges does your family face because of SIOD? We are always aware of the fact that Connor May need medical attention at any time for many different reasons.