Organized by: susan rotondi
It's official... I am signed up for Ironman North Carolina to raise money for a co-worker who's daughter who is ill and needs some assistance with her day to day needs. This is my New Years Resolution for 2016 and I hope this child is able to receive what she needs to make her safe and relieve some of the family's financial bourdon... I swore, I wasn't doing another Ironman, but this broke my heart and deserves attention... Lyra is a RARE gem! She technically has no "diagnosis" as her illness remains UNNAMED... She has Global degeneration of her brain and 3 RARE mutated genes. Right now the family' out of pocket medical expenses For Lyra are outrageous and there are thousands in unpaid medical expenses. She needs new orthotics, a larger wheelchair now... Right now, this little beauty can perch herself on her arms. She cannot crawl or scoot, but has developed a unique rolling maneuver. She cannot speak, does not cry, and eats pureed foods. She chokes a lot, and if this does not improve she will need a G-tube for feedings. We really work on her feedings to try and avoid this. I am trying to raise money for both the expenses of her insurance co-payments, as well as unapproved items that WILL improve Lyra's quality of life. We do not know what lies ahead for Lyra but we want every day to be her best day! Lyra's story can be found on Facebook under "Team Lyra". Thank you for taking the time to read our story!