Ryker's SDS Story and Journey to Bone Marrow Transplant

"Ryker has been such a strong little man throughout these past couple of years with going through so many tests, procedures and doctor visits." His mom Brooke shares with admiration. Read this US family's story, here.

Ryker has been such a strong little man throughout these past couple of years with going through so many tests, procedures and doctor visits. No way can I describe it all... but Ryker has always had slow weight and height gain. He stopped eating at 10 months old, got an NG tube and then later a G-tube, and is now completely tube fed. He also has to have an enzyme before each feeding to help his pancreas absorb more fat. Ryker’s blood work then started showing us some bad signs and he began to bruise easily and get petechiae. For the longest time, we didn’t have an answer.

Well, we finally had a whole exome genetic test done where we received a diagnosis at the end of January 2021: Shwachman-Diamond Syndrome. As it is a lot to understand, it’s been a lot for me and for all of Ryker’s family to take in.


After Ryker’s bone marrow biopsy came back following his diagnosis, we have learned that Ryker needs to have a bone marrow transplant as his bone marrow biopsy showed that he is on the verge of leukemia. Beginning today, April 19th, Ryker will have a whole week or so of evaluations at the hospital, will go through chemotherapy, then the bone marrow transplant will take place. We are doing this all at Cincinnati Children’s Hospital. Ryker will be in Cincinnati for 4-6 months as he needs to stay in Cincinnati until he builds up his new immune system.

After Ryker’s bone marrow biopsy came back following his diagnosis, we have learned that Ryker needs to have a bone marrow transplant as his bone marrow biopsy showed that he is on the verge of leukemia.

The diagnosis and news of him needing a bone marrow transplant has hit our family very hard and quickly. The timing is also such that Ryker starts his procedure as his baby sister was due the 17th. Because of just delivering Ryker’s baby sister, I cannot be with Ryker in Cincinnati until I’m all healed up from birth and labor. It’s been breaking my heart, but I will be switching out with Ryker’s dad on May 22nd to be there for Ryker throughout the rest of the process. I cannot wait to be by Ryker’s side, but he really is such a strong little man.

[Editorial comment: If you wish to support this family directly, they have created a GoFundMe page. It's not affiliated with the SDS Alliance.]