This condition is a neuromuscular disorder that causes weakness in the arm, leg, trunk, throat, and face muscle.
This means that the skeletal muscles in their bodies can become weak and not work as well as they should, including the muscles used to breathe.
The twins are the only ones in the State of Hawaii with this disease and must continually fly to Stanford Medical Center for care, continued testing and checkups.
Currently, Arthur uses a breathing machine at night, has some leg and hip weakness and mild scoliosis. Ava has been affected more with the disease. She has facial, neck, abdominal muscle and significant leg weakness (resulting in her using a wheelchair and leg braces at times). Ava also uses a breathing machine both at night and many times throughout the day and has moderate scoliosis.
With each growth spurt they have, their affected muscles will be more demanded upon and will weaken.
At this time there is no cure or treatment for Nemaline Myopathy and Cornstar (who is a single mom,) has been trying her best to provide a normal childhood experience for her happy third graders.
We, (the Waimea Wranglers Rough Rollers,) derby sisters/brothers of Constar and derby aunts/uncles of Ava and Arthur; humbly ask for your assistance and support in our efforts to raise money to offset the financial hardship that has been placed upon their family. Your donation will support their expenses incurred due to the disease.
Mahalo for your support
- Alyssa Dunlap
- Carla Reed
- malia Obrien
- Stephanie Iona
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