Hoops for Hunter brings hemophilia awareness to McNairy County
By Amanda Lowrance
Children are very susceptible to falls, accidents, bruises, or injuries, especially as toddlers learning how to walk. Imagine developing through childhood with hemophilia when the slightest mishap could be permanently damaging or life-threatening to the body.
Four-year-old Hunter Wilson of Hoops for Hunter has been diagnosed with severe Hemophilia type A, which means that there is very little to no factor works in the blood, making it hard for bleeding to stop once injured. On the highest level of severity, injury can occur with no known reason. For Hunter, his life has been spent walking on thin ice.
“Watching Hunter deal with all this has been hard,” said mother LeAnn Wilson. “I am very proud of him. My husband and I call him our hero.”
There is no cure for hemophilia and all treatment is intravenous, meaning inserted through the blood stream. Hunter was born with this bleeding disorder and has three infusions a week, which costs approximately $5,000 a month.
The expenses rise, along with the concerns, if a bleeding incident were to occur. Treatment helps to create clotting in the blood that is not naturally occurring in these patients.
“As a mother you naturally worry about your kids,” said Wilson. “But with a child with hemophilia, it’s not the outside you have to worry about it’s the inside. I worry more about what I can’t see.”
A previous incident that involved a head injury sent Hunter to the local hospital for tests. Even after clearing the tests, he was transported by ambulance to Le Bonheur Children’s Hospital for four days of observation and infusions every eight hours to ensure the bleeding had stopped.
Injuries to vital areas such as the brain are life-threatening depending on the amount of blood loss.
The Wilson family has dedicated their time and effort to creating awareness for bleeding disorders and began the Hoops for Hunter event last year hoping to get McNairy County involved in a program that has reached out and helped them in many ways.
This disorder is inherited and carried through females. The incidence of hemophilia is less likely to affect females but will carry the gene within the female to their children.
Janet Patterson, special events coordinator of Tennessee Hemophilia and Bleeding Disorders Foundation has a unique story tracing the inheritance back two generations in her family. Patterson has a younger brother and a young son who have severe Hemophilia A, just like Hunter.
Treatment works better for children than for adults. Living with the Hemophiliac disorder overtime will cause joint damage and long term arthritis and tissue damage.
Nearly 20,000 people in the United States have hemophilia, and 80 percent of them have Hemophilia A. This disease dates back to a few centuries ago when the royal families in Europe married within the family, which contained the disorder. There are new statistics that show evidence of spontaneous mutation as well.
The THBDF has helped many families to face the ups and downs of bleeding disorders. Last Saturday, these mothers teamed up and reached out to the community on an issue that has become a big part of their lives.
“It fit like a glove for me to work in an industry that I am passionate about,” said Patterson. “The foundation supports people with bleeding disorders in general. Hoops for Hunter has been a learning process for both of us so we can improve the event in the future together and we both look forward to it.”
For the past two years this event has featured several basketball teams who competed at the Selmer Civic Center for a good cause and recognition. This year’s winning team won hands down, and the hemophilia advocates awarded locals Rameil Pollard, Tyrone Luster, Willie Loving, Rakivias Pollard, Derrick Sain, John Damron, and Jacob Walker with individual trophies and also presented a Car & Motorcycle Cruise-in People’s Choice Award to Dickie Meek of the Tennessee River Old Iron Antique Tractor Club.
Several new sponsors jumped on board this year as well, such as BioPlus, Matrix Health, Paragon Hemophilia Solutions, and Factor 4 Life to help raise money for the THBDF.
“The THBDF not only helps families deal with hemophilia but also with other bleeding disorders like von Willie brand disease sickle cell,” said Wilson. “The kids have a camp to help teach them how to be independent and it allows them meet other children and adults dealing with the same disorders. We reached our goal and raised over $3000 this year.” Wilson and Patterson are already discussing next year’s event and are dedicated to telling their stories and answering questions.
“Questions to me, is just a way to empower my local community,” said Wilson, “so I welcome them all the time.”
For more information on bleeding disorders of the foundation please visit www.thbdf.org or join them on Facebook.