Tyler's Story
written by mom Chris

Tyler was born with a genetic illness called Shwachman Diamond Syndrome. SDS is a disease that can involve the pancreas, liver and bone marrow- In Tyler's case the marrow is the most involved. Tyler had his first BMT on February 18th, 2000 and we found out in April that he rejected the graft so he would need a 2nd Transplant!

Tyler had struggled with this disease his whole life. From the time he was born until his last days, he fought many many battles. His first battle started about the time he was 3 months of age - he was sick with a fever and his white counts bottomed out so he was airlifted to the Children's Hospital in Seattle. At that time, they thought perhaps he had Leukemia but after doing a marrow biopsy that was ruled out, so we were sent home wondering why our baby had become so sick so quickly.

After many hospital stays for respiratory infections and sepsis, his pediatrician decided to test him for Cystic Fibrosis. At that time I worked at our local hospital in the Pediatric Department, so I had access to some medical literature. I had wanted to photocopy some information on Cystic Fibrosis for my family, so while looking up CF in one of the medical books I came across the definition of a disease I had never heard of.... Shwachman Diamond Syndrome, and for some reason I was drawn to reading it.

It was incredible. My son had nearly all of the features of this disease. I contacted his pediatrician and shared what I had read. He came in and read the literature and THANKFULLY agreed with the finding. At that point he referred us back to Seattle's Children's Hospital and within 4 weeks Tyler was diagnosed with Shwachman Diamond Syndrome, and then shortly after that, he was diagnosed with Myelodysplasia (a secondary bone marrow disorder which is why he was being transplanted).

It was nice to put a name with what was causing our son to be so sick so often. Tyler had many infections. He did his fair share of fighting battles at such a young age. For the first years of his life that's all he knew.... how to fight these "sickies" away. The last 6 months were very hard. Tyler and Mommy were in Seattle receiving medical care, while his Daddy and big brother Zach were back home and would come over on the weekends.

Tyler's body accepted his marrow of his second transplant , which was on July 11th, 2000 and he was on his way to going home. Momma and Daddy were ready to be home as a family. On August 25th, 2000 Tyler started to have a hard time breathing and was transferred up to the PICU and the news that the doctors gave us was terrible. His lungs were full of infection and his little body was fighting so hard to get better but after 6 years of being so strong and our little hero, his little body had enough.

Tyler passed away on September 15th, 2000 surrounded by those who loved him so. Momma and Daddy were singing his favorite song "Baby Beluga" to him and praying for a miracle as he took his last breath.

Tyler is missed so much each and every day. I am now a preschool teacher for Head Start, his Daddy is a Radiology Tech and did his schooling in memory of Tyler. Zach is doing well in school, he loves sports and is very artistic.