Skyler's Special Something by Akua Boakye Okunseinde

Author:Akua Boakye Okunseinde [Okunseinde, Akua Boakye]
Language: eng
Format: epub
Publisher: Akua Okunseinde
Published: 2022-05-20T00:00:00+00:00

Afterword

My son Tobi is my inspiration for Skyler’s Special Something. My husband and I found out that Tobi had sickle cell disease when I was eighteen weeks pregnant. We were living in London at the time, and I received a phone call with the news while I was at work. Upon receiving his diagnosis, I was anxious and scared, but at the same time incredibly determined to educate myself, family, and friends about how to ensure that Tobi’s health journey was one of optimism and possibility.

Tobi had his first sickle cell crisis at eight months old, and he had four more crises before his first birthday. We made the decision to move back to the United States to be supported by family, as well as to be surrounded by the depth of sickle cell research and development in the New York tri-state area. Tobi, now three and a half years old, is doing exceptionally well. Tobi is fortunate to have a younger brother who is a Human Leukocyte Antigen (HLA) match to him. HLA typing is used to match patients with donors for bone marrow or cord blood transplants. Currently, a bone marrow transplant is the only known curative option for sickle cell disease. With Tobi’s matched sibling as a donor, we are preparing for Tobi to undergo a bone marrow transplant in the spring of 2022. The bone marrow transplant will replace Tobi’s abnormal stem cells with healthy cells from his brother. We are incredibly hopeful that Tobi’s transplant will lead to a sickle cell-free future!

To date, Tobi’s regimen has helped to keep him healthy on his sickle cell journey. Please consult your hematology team to determine the best treatment for your loved one.

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