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live exceptional lives role model for those with
hemophilia
. instead of letting the disease bring her down,
hannah
faces it head on. she explains, ?
hannah
has faced this with greater confidence than most adults would have. i have seen her get knocked down a few times this year only to rise stronger and more determined to live life.?
hannah
was recently chosen to participate in a broadway- style production,
hemophilia
: the musical , in new york. children from across the country who have bleeding disorders were selected as the cast. the audition process was intense, but
hannah
knew this was something she had to do. she says, ?there are different ways to do normal things. most kids feel like they can?t do anything active at all, but singing and the arts are things you can do in the community without straining your
joints
and muscles.?
hannah
?s thrilled to give back to the
hemophilia
community through the musical, but her giving back doesn?t stop there.
hannah
and her family run a national charity called hope for
hemophilia
, which provides resources for those living with
hemophilia
. ?if you are a kid, have a child with a disorder, or have family or friends with any kind of disorder, i hope you look to the future even though it may hold pain,?
hannah
encourages. ?i hope you can find solace or help in the good things in life. stay positive and stay in touch with your community.? carla beams with pride as she shares how brilliantly
hannah
has handled everything. she says, ?i really can?t explain the emotions when your child is dealt a hard hand, and rather than give up, she chooses to ?ride the bull.?
hannah
takes what is given to her and quite literally makes the absolute most of it.? ? and she has had to learn how to manage her days. she says, ?what makes my days different is that i have to plan ahead for anything physical i might be doing. at our house, we call it ?saving our steps.? there are only so many steps in a day my dad, my sister, and i can take before bleeding into
joints
and pain ensues.?
hannah
must decide where she wants to spend her steps and then plan rest for before and after an activity. she must also ice her
joints
and muscles, if she has bled. carla james,
hannah
?s mother, says
hannah
?s diagnosis explained a lot. she could finally understand some of the pain
hannah
had experienced, and she no longer felt helpless. she?s proud of her daughter for becoming a positive l ike most 15-year-old girls,
hannah
james enjoys going to the mall with friends, dancing at friday night football games, and spending time with family and friends. unlike most people, however,
hannah
has to meticulously plan her days to prevent her from experiencing symptoms of
hemophilia
.
hemophilia
is a blood disorder in which a person is missing one, or part of one, of the 13 clotting factors necessary to help the blood clot and heal minor bumps and bruises. it can range from mild to severe, and the most common symptom is internal bleeding into muscles and
joints
, causing joint deterioration.
hannah
, her sister, and her father all have
hemophilia
.
hannah
was diagnosed two years ago, by madeline rathle hurdling over
hemophilia
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