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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.

High School age or younger children with Neutropenia who have met the indicated qualifications and submitted the application are eligible to be a Junior Ambassador. Each year, the program will be one year (September 1 of the current year- August 31 of next year, so as to correspond with the school year) and will be based upon the qualifying activities that occurred in the year immediately prior to the start of the new Junior Ambassador term. Applications are due  August 15th each year.

Announcing our 2019-2020 Junior Ambassadors

JUNIOR AMBASSADOR ~ Ella Jewell, age 10, 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.Click here to read Ella’s story.

Update: Ella Jewell has been busy “starting my own Instagram account to encourage all people to stay positive. I post different events that are going on through the Ella Jewell Foundation (EJF) and the National Neutropenia Network (NNN). I write about staying positive in everything that you do, especially during the COVID-19 quarantine”.  Her involvement in a local Princess Ball that supports local children’s charities inspired her to start her Instagram page. You can follow Ella @ellajewell2.

JUNIOR AMBASSADOR ~ JAIYA, age 12, North Carolina
Jaiya is a 7th 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, earning Jaiya the title of one of our Junior Ambassadors for 2019-2020. Click here to read Jaiya’s story.

Updated Story: Jaiya’s mom notes that “Jaiya spent a lot of time in the hospital and away from school back in the Fall.  However, she did have a successful few weeks playing varsity volleyball as a 7th grader.  She also started her next service project of hand knitting blankets and scarves for sick children in the hospital.  She held a Paint for Neutropenia event to raise funds to purchase the materials for the project.  40 people attended the event and it was amazing. Being in quarantine [due to the pandemic] has allowed her more time to increase production of the scarves and blankets”.

JUNIOR AMBASSADOR ~ KARA, Age 15, 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.” Click here to read Kara’s story.

Update: Kara writes, “I am currently a sophomore in high school and I decided to apply to a college credit plus program at a local community college. I was recently accepted. This program will provide me with the opportunity to graduate high school with an Associate’s degree in business and also double my junior and senior year credits. I am excited about this new chapter, and I can’t wait to see what’s next!”

JUNIOR AMBASSADOR ~ LIAM Age 14, Ohio

Liam is in the 9th 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”.  Click here to read Liam’s story.

Update: Liam is finishing up his freshman year in high school.  He had the opportunity to run on his high school’s varsity cross country team back in the Fall with his brother Evan who is a junior. Their hard work and dedication (sometimes running 50-70 miles a week in practice!) paid off when they won the Division III State Championship!! He is looking forward to next season as well as to hopefully joining the school’s leadership team for his sophomore year.

JUNIOR AMBASSADOR ~ LUKAS, age 3, 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.  Click here to read Lukas’ story.

Update: Lukas has been busy with his twin sister! His mom writes “one of Luke’s favorite activities is to go to Sesame Place to ride the rides and see his favorite characters (Elmo and Cookie Monster!).  Luke also had the opportunity to go to a Monster Truck Show at the beach and he even got to ride on one!   In the fall, Luke was able to feed one of his favorite animals at the zoo— the giraffe. We were cautious and made sure the experience was contact free and he washed his hands immediately after”.

Congratulations Ella, Jaiya, Kara, Liam, and Lukas! 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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