Hopeful trip to Disney
Disease takes life of sibling before Make-A-Wish trek can occur
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Axile Morez, right, is pictured with his late brother, Gatlin, in a photo taken last fall. Since that time, Gatlin has passed away from Hunter’s syndrome, a disease the brothers shared. Axile’s family is working to raise money for a family trip to Disney World, which is being aided by the Make A Wish Foundation.
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Axile Moretz is pictured on a family outing. The 4-year-old suffers from Hunter’s syndrome, a disease with no cure. His family is raising funds for an October trip to Disney World, a venture aided by the Make-A-Wish Foundation.
Four-year-old Axile Moretz is hoping to make a trip in October that his late brother, Gatlin, will no longer be able to make.
The brothers, suffering from Hunter’s syndrome (MPS2), had been promised a Disney World trip by the Make-A-Wish Foundation, but Gatlin passed away unexpectedly April 22 at the age of 2.
“We were really surprised, because Gatlin was the healthier of the two,” said their grandmother, Patricia “Teresa” McMahan, a Claxton widow, who was already raising three children when she gained custody of the brothers two years ago.
In that time, they discovered they both have the rare disease, mucopolysaccharidosis Type II, also called Hunrer’s syndrome, which renders the body unable to break down sugar, creating many ripple effects, including weight gain (Axile current wears clothing sized 10-12 in boys) and a predisposition for upper-respiratory infections.
Axile receives regular infusions, currently at home, but previously at East Tennessee Children’s Hospital. His feet “turn in, and he has a hard time walking,” said his grandmother, who also notes the youngster is 90 percent deaf.
“It’s really awful,” said McMahan. “Axile undergoes a lot of treatments, but there is no cure.”
While certainly grieving for what they have lost, the family is focusing on what they have, and looking ahead to the Disney World trip.
“The average life expectancy for Hunter’s patients is seven years, and we want to put as much living as we can into his life, however long that is,” McMahan said.
While Axile and McMahan’s amusement park tickets are covered by Make-A-Wish, as are their plane fares, a Go Fund Me account has been set up not only to help raise money to ensure other family members can go on the trip with Axile, as well, but also to help offset his myriad medical expenses.
“Everyone in our family helps out with him — it takes four of us to be with him for his infusions [from his nurse] every Tuesday, for example — and he is close to them, so we are hoping everyone can go, to share in the experience with him,” McMahon said.
Accommodations for 10 family members, including Axile’s half-brother, Kadin; two half-sisters, Riley and Carissa; an aunt and uncle; and a cousin are planned.
McMahan said someone stepped in to cover the more than $4,000 cost of plane tickets, but money still needs to be raised for the amusement park tickets, food, car rental and lodging for a total of around $9,000.
Fundraisers are in the works and the Go Fund Me link can be found at gofundme.com/f/axile-and-gatlin-medical-trips?qid=7dc647b9bcc8daaacbdbeb65af6a403c.
Anyone wishing to contribute to this once-in-a-lifetime opportunity for the family may also call 865-266-0084, or email ninabell1406@yahoo.com.
The family will be standing at Claxton School on Aug. 10 and Sept. 28 to collect money for the cause.