In August of 2020, Maya’s parents received the devastating news of a diagnosis of a severe neurological degenerative disease called INAD. From 10-months-old until now, they spent every day questioning the progression of her development and enduring countless doctors visits to determine a diagnosis. Now that they know the serious nature of this degenerative condition, there is simply nothing they can do but ease her symptoms and make living as comfortable for her as possible. She endures various levels of dystonia throughout the day and takes medication to ease the symptoms, but it still seems to overpower the meds and they’ve noticed more and more arm jerking and head throw backs. She also wears hearing aids & glasses and uses a wheelchair to navigate her environment. She needs full assist with feeding, toileting, and daily living activities. She is the middle child of five and she is loved beyond measure by her parents and siblings.
With the progression of her condition and COVID playing such a huge role in all daily activities, her parents felt burdened with the knowledge that Maya may continue to weaken and not be able to enjoy a family experience if they didn’t do it before INAD took any more from her. They had been approved for a wish from a national organization, but when they found out they had created restrictions on travel for families that wouldn’t be lifted for months, they were devastated. Maya just couldn’t wait that long as her fragile body continues to fight. It was then that Kao (Maya’s Mom) felt compelled to look for a local charity that could support their family with the understanding that time was of the essence. Within hours of reaching out, Minnesota’s-Own Wishes & More, approved Maya’s wish and started making plans for them to experience Give Kids The World Village in Florida.
As an independent local charity, Wishes & More has always prided itself on being able to make decisions based on the individual situation of the child, along with the physician’s support of the wish. The larger and well-known national organization, along with the local chapter, made it a policy not to allow travel wishes to be completed until 2022 due to COVID. Consequently, numerous families have switched their applications to Wishes & More so that they can experience a travel wish while their child is able to fully enjoy the experience because of their condition. Maya’s condition was declining so rapidly, that her family prioritized her enjoyment of the wish over concerns to travel – and we were there to support them within weeks of their application coming in. Wishes & More has already sent 6 families to Disney World this year (1 family is there NOW!) and we have 20 additional Florida Parks wishes taking place this year (so far) as families continue to desire to have their kids experience a wish.
Join us in welcoming back this sweet family from their wish trip and thank you for standing behind us in our mission to ensure we’re here to support our families when they need us!
