The Hyper IgM Foundation Blog
HUNTER BILLBE’S MEMORY HONORED WITH FUNDRAISER FOR HYPER IGM FOUNDATION ON RARE DISEASE DAY
Losing a child has to be about the most devastating event a human being can go through. Unfortunately, loss is something all too familiar to the parents and families in the Hyper IgM Syndrome community. We try to share some of the stories of our young heroes to honor their lives and inspire others to live up to their example. One such child is Hunter Billbe, who passed away in 2012 following complications from a transplant aimed at curing his Hyper IgM Syndrome. His mother, Lilly Sarah Cole, has decided this year to honor Hunter’s memory with a Fundraiser for Hyper IgM Foundation on Rare Disease Day. Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year the focus of the day is on Research, which is also one of the Hyper IgM Foundation main goals for 2017. The Foundation has announced two research grants funding for researchers interested in the advancement of a cure for Hyper IgM Syndrome.
In Hunter’s story on her fundraising page, Cole explains, like only a mother her lost her child could, the hardships that Hunter dealt with strive during transplant. She honors Hunter and aims to help fund the research that will bring a cure for all boys with Hyper IgM Syndrome. A cure that would not involve the risky transplant that Hunter had to undergo. The Hyper IgM Foundation has been working with doctors and experts around the world to better understand the disease and to improve quality of life for the patients. The Hyper IgM Foundation serves as a resource to these families and their physicians to guide them in preventative care, treatment and diagnosis, connects families living with Hyper IgM, and provides information about cutting edge treatments.
Here are Cole’s own words on why she got involved with the Foundation:
Hunter Billbe was a child who had a loving way about him, from video games to ambitions of being a Navy Seal. We always encourage our boys to dream big and work hard. Sadly, Hunters life was to be cut short. The disease responsible was X-Link HYPER IgM and the complications it brought to our world. this disease affects 1 in every 1 million people and is also referred to as a Rare Disease or SCID (Severe Combined Immune Deficiency)
After receiving a bone marrow transplant in Cincinnati Hunter fell very ill with zygomycosis. Before he went in he had prior issues dealing with ongoing Giardia, this Is common in our water system and around farm animals, if left untreated will cause Crohn’s disease. Bottled water was a must, veggies had to be washed off and try as we may he had a habit of chewing his toe nails. Also on the list at 10 years of age Hunter ended up in the hospital undergoing biopsies for Hystoplasmosis, found in dirt or around bird feces. There is no way of keeping this from occurring, and it swells your stomach Lymph nodes to the size of golf balls. Hunter literally could not walk and was throwing up constantly
Believe it or not we were lucky in his life. A study from his Doctor at St, Judes had determined living to 10 years of age was a normal life expectancy, we were so fortunate to have Hunter for 12. Please, Help us get these numbers higher.
These reasons are only ours, there are several others still with us today needing advances in medicine, without funding it will not be possible. So please, if you cannot donate, can you share? It would be a blessing to so many others and maybe could help our family find some comfort in our own loss.
Please do not forget Rare Disease Awareness Day Feb 28th of 2017
To show how very rare this disease is, at the time, Hunter was only the 9th child at Cincinnati to receive a BMT with this disease. There just wasn’t enough information on it catch certain things, that’s what this hope is for. Thank you all for taking the time, it is so very appreciated