Super Aiden's Biggest Battle
Aiden had his first seizure at three months of age. He was diagnosed with Tuberous Sclerosis Complex (TSC), a genetic disorder that causes tumors to form in various organs of the body. Aiden has these tumors (called tubers in TSC because they are usually benign) in his brain, one kidney, heart, eyes, and skin. The thirty five or more tubers in his brain cause his epilepsy. He also developed a catastrophic form of epilepsy called Infantile Spasms (IS) around four months of age. These seizures occur in clusters and are difficult to control. Aiden had seizure control for about a year before they came back. Now, they’re causing the regression of hard-won developmental progress as well as physical weakness. He went from a fairly strong 6-year-old to a 7-year-old that has need for a wheelchair. One year of uncontrolled epilepsy has robbed him of his quality of life. And after seven years of trying numerous medications, and suffering through their side effects, neurosurgery is the best hope left at controlling his seizures.
Aiden's dad, Doug, works full-time as a service manager and Danielle stays home to take care of Aiden and his three other siblings. Danielle was recently diagnosed with Rheumatoid Arthritis and has spent the last year suffering through flare-ups and allergic reactions to medications meant to manage the RA. Her illness as well as Aiden's Tuberous Sclerosis has put the family's budget under strain. The possibility of the family being able to afford this much needed surgery for Aiden is slim.
Thankfully, Aiden and his family have the attention of a renowned neurosurgeon. But they will need help financing a trip, possibly as soon as May, to consult with his specialized team at Texas Children’s Hospital in Houston. The trip is expected to be difficult and last 3-4 weeks. The family needs help not only in paying for the medical and travel expenses associated with the trip, but also the lost wages while Doug must be away from work for the few weeks needed for Aiden to have brain surgery.
Any money raised will be humbly accepted and used to pay existing medical bills as well the trip to Texas and any new medical expenses incurred beyond the scope of their insurance.
They have always looked at Aiden as their brave little boy, their hero for his strength in an unimaginably difficult situation, their Super Aiden. Please help Super Aiden win this battle against TSC so that he might have the chance to once again have wind beneath his cape.
You can read more about Super Aiden and Danielle's family on CrossRoadTrippers where she and I blog about life and more.
This time, the trip will be one long stay of 3-4 weeks instead of two trips of about 2 weeks. There will be no time to save up money between trips this time. This is putting an enormous strain on the family's finances.
On top of that, Danielle is still fighting to control her RA and she never knows from day to day what her health will be like. She can't face the trip without Doug, but they also can't afford for him to take the time off from work.
They need our help to get Aiden where he needs to be in order to fight this formidable foe!
Please continue to keep the Myers family in your thoughts and prayers as Super Aiden continues to recover!