Axile Medical trips and expenses

Help save the lives of Axile and Gatlin! Axile age 3 and Gatlin age 2 are two very special brothers, who are engaged in a daily struggle every day in there young lives. In 2022 they were diagnosed with an extremely rare genetic disorder called hunter syndrome, the disorder is chronic,progressive, and life-threating. Hunter syndrome attacks axile and gatlin's vital major organs including their heart, brain, liver, kidneys, spleen, and Respiratory systems. It negatively impacts the boys' daily lives, especially in their normal growth and development. The boys must have around-the-clock help with care and medical assistance. They are fortunate to have a loving family to support them, especially a wonderful grandmother who is lovingly devoting all her time and energy to providing the love, home, and care they need. Currently, there is no known cure for hunter syndrome. The boys are getting treatment from East Tennessee Children's Hospital in knoxville but the weekly infusion treatments are only able to slow the progression of the debilitating disease. The boys are the only children in East Tennessee to have Hunter syndrome and Children's Hospital in knoxville has no specialist that has ever treated a child with MPS2 . There is hope however, currently, the boys have been accepted into a research project in Chapel Hill, North Carolina that offers both care of a specialist in hunter syndrome and also new medications as part of this research project that could dramatically improve their symptoms, and expand their life span. Ultimately leading to the cure for hunter syndrome. The boys will have to be traveling every week for 3 or 4 days to Chapel Hill. The family needs your help for the boys to receive this important and life-saving medical care. While the cost of the medical care is covered by the project's research grant. The cost of taking the boys for care in another state is not . The family has been working to raise money to help pay for the cost of a handicap accessible van to transport the boys to receive this medical care. Any help you can provide would be greatly appreciated.. asking for prayers as well. Thank you all so much