Age 8 – Huntington, WV

We would like to welcome Hannah to our Junior Ambassador program!! We are excited to have you part of our team—you are already making a difference!!
Stephanie, Hannah’s mom writes: “Hannah was diagnosed with Severe Congenital Neutropenia in October 2021, at the age of 5 years old. Although Hannah was born with this disease and showed all signs of neutropenia throughout her childhood, our local physicians never identified it. After a lengthy stay at our local hospital and seeing Hannah’s health decline before my eyes, I advocated for a transfer to Cincinnati Children’s Hospital. Within 25 minutes of our arrival, Hannah received her diagnosis. I will never forget the feeling that came over me when Dr. Niss told me, “it is truly a miracle that your daughter made it to the age of 5 without the proper treatment”. I know that pushing for that transfer is what ultimately saved my daughter’s life and is the reason why will we make the 2-and-a-half-hour drive to get her the proper care that she needs.
Hannah’s physical quality of life has improved dramatically since being treated with GCSF injections. She is no longer having monthly hospital admittances or chronic bacterial infections and she is able to attend school. However, Hannah’s mental health is still a struggle due to her late diagnosis. She suffers from medical trauma from the constant injections, monthly (or more) blood draws, and occasional IVs. Hannah does see a therapist who specializes in medical trauma to help with her mental state and also participates in equestrian therapy.
Since Hannah’s diagnosis in Oct. 2021, we have focused on local outreach and education in our area. Hannah has hosted a Neutropenia Awareness 5k and has petitioned several local government officials. In 2022, we sent her story to our Governor of West Virginia who awarded Hannah an official proclamation to recognize Rare Disease Day in Hannah’s home state. In 2023, her story was picked up by West Virginia Senator Moore-Capito who shared it with representatives in Washington D.C and they flew a special flag over the Capitol Building on Rare Disease Day and then mailed it to Hannah, along with the official certificate. Hannah is very proud of what she has accomplished and looks forward to continuing the fight to spread awareness of Severe Congenital Neutropenia.”
“I know that God gave me this disease because I am meant to do something. It’s like having a superpower that I just haven’t unlocked yet” – Hannah Long
Thank you Hannah for joining the team of ambassadors! We are proud of you and look forward to all the good in store for this year!