Jeanne Siegel

Age 9, 4th Grade – Sellersburg, IN

Welcome to the Junior Ambassador team, Maison!! We are excited to have you be a part of the team as an advocate for kids with neutropenia as well as with other childhood illnesses, raising awareness about Neutropenia, and raising funds to support your local hospitals!

Maison’s mom, Tracy, shares his story:

“Maison was diagnosed with a rare blood condition known as Neutropenia at the age of 6. His treatment involves multiple weekly blood draws and frequent ER visits due to fevers. To monitor changes in his bone marrow, he undergoes surveillance bone marrow biopsies every 3 months. He has had 7 of these procedures so far, with the next scheduled for October 2024. We travel to Bethesda, Maryland, for research at the National Institutes of Health as part of the NIAID Primary Immune Deficiency (PID) program, and to Cincinnati, OH, for appointments with his hematologist. We will also soon be traveling to Boston, MA, to consult for his next Biopsy with Akiki Shimamura, MD who focuses on neutropenia and Bone Marrow Failure. Maison and his mom remain positive and, alongside the neutropenia community and with all of the research efforts, are dedicated to working towards discovering a cure.”

Maison has shared his personal story with his classmates on Rare Disease Day (2/29/24). He produced a video for the Kosair for Kids Foundation to raise awareness about neutropenia February 2024. Maison has also attended a community networking breakfast, where he spoke about is experiences with neutropenia to various businesses, aiming to both raise awareness and collect donations for the Kosair for Kids Foundation June 2024. Additionally, Maison made a significant impact by raising funds for the Norton Foundation to support children at Norton Hospital. He was also involved in the ribbon-cutting ceremony for a newly opened Drake’s Restaurant in Jeffersonville, IN March 2023—a local business who has been supportive of Maison on his neutropenia journey.

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!

Age 14, 9th Grade – Rancho Palos Verdes, CA

We welcome Rylan to the Junior Ambassador Team! We look forward to connecting Rylan and his family to our community and appreciate that they are sharing his story to help raise awareness.

Rylan’s mom, Kari, writes:

“Rylan was diagnosed with Benign Neutropenia at birth and we were told he would grow out of it by age 5.  He was treated like any other kid when he had fevers and infections.  He had fevers and illnesses about 90% of the time. He also had multiple hospital stays until he was 3 years old, and then at 3 years old, he got RSV and developed severe pneumonia including a pleurel effusion and was placed in the PICU for 3.5 weeks. After that horrendous hospital stay, he was prescribed the Vest Machine along with Nebulizers 3x’s a day.  We think the continuous infections, and not being diagnosed with the correct kind of Neutropenia – and therefore not being treated with a fever protocol, etc – lead to his numerous infections worsening his lungs and Rylan ultimately developed Bronchiectasis in both lungs.  Rylan’s infections and fever continued and at 8 years old, he was referred to a new Hematologist who suspected his Neutropenia was never Benign, but rather Severe Congenital Neutropenia. Genetic Testing was ordered, and came back that Rylan had a mutation of the Elane gene. He was immediately put on Neupogen and was able to stay well enough to go to school for the first time at 9 years old. We have been working hard to try to keep Rylan’s lungs from worsening.  His lung function is at 67% currently.  The SCN diagnosis, had it been detected earlier, could have possibly saved his lungs, however, we are here now and trying to do everything we can to keep him healthy and keep his lungs from worsening.  We have moved from the city to the ocean where the air is cleaner, Rylan has gone through many different medications to try to find the best treatments, undergone many many procedures, and has been dedicated to airway clearance multiple times a day as well his Neupogen shots 3x’s a week. For us, Neutropenia and Bronchiectasis are hand in hand because one caused the other. That’s our story and it’s far from over.” 

Thank you Rylan for joining our Junior Ambassador team and thank you Kari for sharing his story.