Hannah Kiresuk, 20, is a noted high school skier who has spent much of her free time going downhill. At 16, she was diagnosed with myasthenia gravis, a rare disorder that causes muscles to weaken.
Now, she is fighting an uphill battle to get well.
Fortunately, she has the support of her family and the entire skiing community. Last February, her fellow skiers hosted a Snowflake FundRacer with the support of the Myasthenia Gravis Foundation of America.
The teams raised approximately $4,000, all of which will go toward funding a bone marrow transplant for Hannah. The procedure is considered “experimental,” so Hannah’s insurance company is declining coverage.
Her family and friends have opened an account with the Children’s Organ Transplant Association (COTA) to help raise the $500,000 needed for the transplant. As of this writing, $79,000 has been donated to the fund.
Hannah undergoes plasmapheresis three times a week, but it’s not a cure. She also takes steroids, immune suppressant medications, and has chemotherapy treatments, so her need for a bone marrow transplant is urgent.
If you would like to help Hannah, consider contributing to COTA for Hannah K. Every little bit will help!
Read Hannah’s full story here.
If you are a parent of a child with MG, the MGFA has a Parent’s Program you may find helpful! If you have any tips, share them below for the MG community!
