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Junior Ambassador Program

As we all know, Neutropenia is very rare which makes it often times an unknown medical condition in our communities. This can make it difficult for children and their families to find appropriate medical care and peer support.  In addition, rare diseases are not as commonly funded for research to help in the advancement of diagnosis and treatment to allow for cutting edge medical management.

Our children have a rare opportunity to turn their Neutropenia journey into something positive.  By becoming involved in community outreach, education and fundraising, our hope is that children with Neutropenia will discover an upside, if you will, to what they have been given in life.  We hope that they will not only learn to advocate for themselves and others, but that they will also help to define the role Neutropenia will play in their lives instead of allowing their Neutropenia to define it for them. Additionally, we hope they will gain a sense of pride in making a difference in their Neutropenia community.

Meet Our 2020-2021 Junior Ambassadors

JUNIOR AMBASSADOR ~ Ella Jewell, age 11, Connecticut
“Ella Jewell was diagnosed with Severe Congenital Neutropenia at 3 1/2 months old. After being told by many doctors in the New York City Area that they were unsure as to why Ella had zero neutrophils, her family sought out the expert opinion of the late Dr. Larry Boxer. After being in isolation with Ella for months, they drove to Michigan from New York. Dr. Boxer helped to diagnose Ella and get her on the one medication available to treat Neutropenia –  GCSF/ Neupogen. The medication worked well for Ella and her family found out the medication was working on Christmas Eve. They were able to share Ella with their family for the first time on Christmas morning. Dr. Boxer referred to Ella as the Christmas Miracle Baby! Ella’s family felt fortunate for how well Ella had done and wanted to do all that they could to move research in the right direction for Ella and everyone diagnosed with Neutropenia. They asked the doctors how they could best support the research. Unfortunately, at the time there was not another organization directly assisting with funds for research. With the support of Dr. Larry Boxer and Neutropenia expert, Dr. David Dale, the Ella Jewell Foundation was established to support Neutropenia Research. The Ella Jewell Foundation works closely with the National Neutropenia Network and the Neutropenia community to help patient support programs and research. Every penny raised is donated. Ella has her challenges with her diagnosis, but her family stays positive and with the Neutropenia community and researchers, they work towards the ultimate goal ~ a cure.” Click here to read Ella’s story.

 

JUNIOR AMBASSADOR ~ JAIYA, age 13, North Carolina
Jaiya is an 8th grader in North Carolina.  She was diagnosed at the age of 2 with Chronic Severe Neutropenia-Autoimmune.  Jaiya’s body responds poorly to Neupogen and as a result has not been able to remain on it as a form of treatment.  Her Neutropenia has caused her and her family to spend countless nights in the emergency department resulting in extended stays at the hospital.  She is blessed with an extremely supportive family and community who are  giving Jaiya a strong foundation to  define Neutropenia on her own terms.  She has certainly found her voice in raising awareness and being an advocate for the Neutropenia community.  Her mother, Anyua, has shared the many opportunities Jaiya has been involved with over the past year, earning Jaiya the renewed title of one of our Junior Ambassadors for 2020-2021….. Click here to read Jaiya’s story.

 

JUNIOR AMBASSADOR ~ KARA, Age 16, Ohio
Kara is a Junior in Cambridge, Ohio. “Kara was born with Neutropenia but was not diagnosed for several months. Prior to diagnosis she endured many illnesses. Once she received an accurate diagnosis and appropriate treatment, she became much more stable. Kara has spoken about her condition to several groups and is passionate about spreading awareness and raising money to work toward a cure for Neutropenia. Kara communicates to younger children and others her age with Neutropenia and hopes she can be a role model for others with Neutropenia.”  Kara continues her her passion for outreach to others with Neutropenia and her commitment to raising awareness and funds on behalf of the Neutropenia community.  Kara has renewed her title as Junior Ambassador for 2020-2021…..” Click here to read Kara’s story

 

JUNIOR AMBASSADOR ~ LIAM Age 15, Ohio
Liam is in the 10th grade in Cincinnati, Ohio.  When he was 1 month old, he was found to have a sore on his hip.  His pediatrician sent him to have some lab work done which revealed a critically low neutrophil count.  He was hospitalized for a week at that time, diagnosed with Neutropenia and started on daily Neupogen injections.  In the months to follow, genetic testing and a bone marrow biopsy revealed that Liam has Severe Congenital Neutropenia, Elane gene mutation.  Liam continues to receive low doses of daily Neupogen injections with great response.  He has lab work done at least monthly with an annual bone marrow biopsy for observation.  Aside from an occasional skin infection that may require an admission with IV antibiotics, Liam is overall, otherwise a “normal, healthy kid”.  When Liam was 8 years old, he was overheard telling his brother’s 10 year old friend all about Neutropenia, lab draws and bone marrow biopsies.  It was at that time that his parents realized that Liam needed an opportunity to “tell his story”.  He started giving presentations to his class every year about his Neutropenia.  Since then, Liam and his family have found several ways to help raise awareness about Neutropenia and funds for research and peer support by joining the efforts of the Ella Jewell Foundation and the National Neutropenia Network (NNN).  They have held garage sales, Bowling events, Turkey Trots, Painting Nights Out and Power Play events at their local Dave & Buster’s.  Liam has also been involved in a few of the past NNN summer conferences, sharing his story with parents and physicians as well as being a role model to the younger kids in attendance.  Liam continues in these efforts and continues to be involved with his local Cincinnati Children’s Hospital community to advocate and give back for all of the blessings he has been given.  For all of his continued work on behalf of the Neutropenia community, Liam once again has earned the title of one of our Junior Ambassadors for 2020-2021….Click here to read Liam’s story.

 

JUNIOR AMBASSADOR ~ LUKAS, age 4, Pennsylvania
“Lukas (Luke)and his twin sister were born healthy at 38 weeks. When Luke turned 15 months, his cheek started swelling quickly and he could barely swallow. He was rushed to the hospital and his bloodwork showed a significant infection in his lymph nodes. It required a hospitalization and strong IV antibiotics. That was the beginning of his medical adventure. His follow up labs showed Luke’s white blood cell count had dropped significantly and was not going back to normal the way it should. It was then that we were referred to Hematology. We ended up seeing a wonderful hematologist at Children’s Hospital of Philadelphia who ordered more tests. They tested him for Autoimmune Neutropenia, but Luke’s antibody test came back negative – it was at that time that he was diagnosed with Chronic Benign Neutropenia.  Luke’s neutrophil count has reached normal range at times since be ing diagnosed in 2017. He has averaged in the low to mid hundreds but has dropped to 0. Recently, we have seen an increase in his counts!  We choose to keep Luke and his sister home from daycare because of the risk of infection/illness. Even with many precautions in place, he usually ends up being hospitalized a few times a year with many Emergency Department visits. ”  Luke’s family has become involved with fundraising for Neutropenia to raise money for the National Neutropenia Network and to help spread awareness and an understanding of blood disorders and their possible complications. Although Luke is only 4, his mom shares how he has played an active role in advocating and helping fundraise for the NNN. As a result, Luke has once again earned the title of one of our Junior Ambassadors for 2020-2021…..  Click here to read Lukas’ story.

 

JUNIOR AMBASSADOR ~ TATE, Age 10, Ohio
Tate is a 5th grader in Medina, Ohio. Tate’s family “has always celebrated Neutropenia as a part of Tate that makes him stronger”, in turn, making their family stronger. Tate and his family have been big supporters of a few of the other Junior Ambassador’s events over the years. They have also attended many of the Neutropenia Network’s family conferences.  Tate’s mom, Gretchen, has shared a bit about Tate’s journey as well as how he has earned the title of one of our Junior Ambassadors for 2020-2021…Click here to read Tate’s story.

Congratulations Ella, Jaiya, Kara, Liam, Lukas, and Tate! On behalf of the National Neutropenia Network and those that struggle with neutropenia, thank you for raising awareness and funds for the rare condition we all share. Thank you to all of our Junior Ambassador’s for being awesome role models for the other Neutropenia kids in our community!!

 

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