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Monthly Mission: Why did you become a Champion? Jun 17, 2019 | By Tony Hart (@TonyHart87)
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@nurseheadakes

Wow - I am so sorry about your little one; and give you praise for your work in bringing attention to this unknown rare disease. My husband and I just moved from WI where there were other rare genetic diseases noted & cared for at Children's' Hospital in Milwaukee over the last 30+ years. As a nurse, I remember the heartaches and difficulties in gaining information, treatments, and answers that weren't always there. It continues to be an area of high emotions, stillness, research and prayers.

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Replies to "Wow - I am so sorry about your little one; and give you praise for your..."
Allison Bones | @team4travis | May 31, 2019

Hi nurseheadakes, thank you for your kind words about our work at T.E.A.M. 4 Travis. We're getting involved in the rare disease community and learning more about so many trials and tribulations as people search for answers to their rare disease. Unfortunately, we had no idea Travis was born without a functioning spleen, this was only revealed after his death, during an autopsy. So, the work we do is in Travis' memory, creating his legacy by hopefully calling awareness to ICA and contributing to research and development of a diagnostic, so that other families don't have to experience death of a child from this silent killer.

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