Child with Rare Neurological Condition Receives Critical Care

June 5, 2025

Diagnosed with Neurofibromatosis Type 1

When Joey was just a baby, his parents began to notice changes in his behavior and mood. By the time he was three years old, Joey had experienced some developmental delays, and his vision was getting worse. He was diagnosed with autism and a rare condition called Neurofibromatosis Type 1, or NF-1 for short. In cases of NF-1, tumors grow along nerve endings throughout the body.



Needing More Treatment

Joey's parents began to accommodate his autism. This mainly looked like establishing fixed routines and sticking to them. They also let him bring objects related to his special interests, such as dinosaur toys, into medical appointments. But the NF-1 was much harder to handle. An MRI of Joey's brain showed tumors growing on his optic nerves, which explained his declining vision.   He would need more treatment for that, including 18 months of low-dose chemotherapy to hopefully shrink the tumors.


From Dilemma...

But Joey and his parents soon ran into a dilemma. The specialists that best could help Joey were located at a neurofibromatosis center in Birmingham, Alabama - almost 240 miles from his home in Mississippi. His parents couldn't afford gas for such a long drive. They worried even more about Joey's health, and how he would access the care he needed.

 

...To Diligence

Joey's health was reaching a crucial point when his parents found out about Mercy Medical Angels. His parents applied for charitable transportation assistance, and were approved. Mercy Medical Angels sent Joey's parents gas cards. Now, they were able to drive to the specialists. With the help they received from Mercy Medical Angels, they were able to perform due diligence in getting Joey to the care he critically needed.



"What A Blessing!"

Now, Joey is two months into his treatment plan. His vision is beginning to improve and his overall health is also getting better. Joey and his family have a long road ahead of them. But at least they're not traveling on that road alone. Joey's parents said: "We are so thankful for this travel assistance, as it is a huge help to making these weekly trips to medical care possible. What a blessing!"

Share this story with others.

Share your thoughts about this story.

Read More Patient Stories

By Stephanie Singer July 23, 2025
Read the story of how a single mother received gas cards to access life-changing surgery, helping her and her daughter to have a better life... in her own words.
By Stephanie Singer July 22, 2025
He needed heart surgery, but the best doctors to help him were in another state. Find out how Mercy Medical Angels' volunteer pilot program helped him get there.
By Stephanie Singer July 21, 2025
Read the story of a patient with a rare blood cancer and how he was able to access treatment, thanks to charitable flights... in his own words.
By Stephanie Singer July 19, 2025
A female Veteran needed to get equine-assisted therapy at Quantum Leap Farm, but had no way to get there. Find out how Mercy Medical Angels and Southwest helped her.
By Stephanie Singer July 18, 2025
Find out how a single mother with multiple rare conditions found the best care possible, thanks to charitable flight assistance... in her own words.
By Stephanie Singer July 17, 2025
She was diagnosed with breast cancer, and opted for holistic and alternative treatments. Find out how Mercy Medical Angels helped her receive the best possible care.
By Stephanie Singer July 10, 2025
A disabled Veteran attended a peer support program known as Warrior PATHH, thanks to charitable flight assistance... you can read his story here, in his own words.
By Stephanie Singer June 30, 2025
Read how a patient with Ehlers Danlos Syndrome (EDS) and other conditions accessed life-changing care out of state, thanks to charitable flights... in her own words.
By Stephanie Singer June 22, 2025
Read how a Stage IV cancer patient flew to the care she needed... in her own words.
By Stephanie Singer June 20, 2025
He had beat cancer once already, but it came back. His survival now depended on whether he could access distant care - find out how Mercy Medical Angels helped.