Drew Central student must travel to Berlin, Germany for medical treatment
By Melissa Orrell
In June of 2020, Gavin Wear, a Monticello native and a lifelong baseball player, began to notice he was having trouble seeing the ball while playing baseball. This was a problem; he knew he needed glasses.
“He was at baseball practice saying he needed to go see the eye doctor,” said Allison Wear, Gavin’s mom. “That he couldn't see the ball.”
As Allison set up an appointment for Gavin to see an eye doctor, she could have never predicted that phone call would begin a journey of months of doctors and specialist visits. A path that would lead to Gavin being declared legally blind by August of 2020; the cause of the blindness, a rare genetic mutation MFN2 of Charcot-Marie Tooth Disease Type 2A. Only 6% of those with this rare mutation affects their eyes. His only treatment option available to regain any of his sight is at the Fedorov Restore Vision Clinic in Berlin, Germany.
Gavin, who has lived in Monticello all his life, was a normal 16 year old Southeast Arkansas boy who spent his life playing catch with his dad and began playing baseball during his T-ball years, according to Allison.
His love for baseball only grew from there. Prior to high school he spent two days a week an hour and a half away from his home in Little Rock at baseball practice and his weekends playing in a travel baseball league. After losing the majority of his 2020 baseball season to COVID-19, Gavin is still on the roster for the Drew Central Pirates 2021 baseball team and even though he has lost most of his eyesight with only partial sight left in his peripheral vision, he aims to never miss a practice or game.
“He is determined to never miss a game or practice,” said Allison. “Even though he can’t play right now, he is there every time the team meets.”
The first eye doctor Allison took Gavin too could not find fault in his vision, but Gavin was persistent and Allison took Gavin to a different eye doctor for a second opinion. It was then that Gavin was diagnosed with an astigmatism and floaters in his eyes.
“He did have floaters so he told him he needed contacts for playing baseball and glasses for driving,” said Allison. “We had to wait for the glasses to come in and we were waiting, of course COVID had everything delayed. Then he came in one evening after work, pretty much pleading with me to tell him the glasses were going to make the black spot go away and the more and more I talked to him I realized he wasn't talking about a floater.”
As a nurse, Allison was alarmed at the information Gavin had just given her. What he was describing is also a sign of a brain tumor. She told Gavin to watch his brother as she drove to the eye doctor to explain what Gavin had just divulged to her.
After describing to the doctor what Gavin had just told her, the eye doctor immediately wanted to see Gavin. During his initial visit, the doctor had picked up a small blind spot during his field vision test but had thought it was a fluke. When Allison got Gavin back to the eye doctor they discovered it wasn’t a fluke, and the blind spot, which Gavin saw as a black spot in his vision had grown.
Gavin was sent to have an MRI preformed the next day to try and discover what was causing the loss of vision, according to his mom. He did not have a brain tumor or anything out of the ordinary. The lack of answers with the MRI led to a referral to a Neuro-opthamologist and a string of specialists.
The race against time had begun, Gavin’s black spot continued to grow and to spread to include his right eye, effectively taking away all of his central eye sight and leaving a small field of sight in his peripheral vision, which continue to deteriorate.
“We have seen so many specialists,” said Allison. “We went to Little Rock and then Monroe and then Shreveport. They thought he had Leber's. We had to get a genetic test and had to wait six long weeks to get that result.”
As fate would have it, while Gavin was in Shreveport awaiting the results of his tests to confirm Leber’s, there was a pharmaceutical company offering a free genetic test for retinal diseases. His specialist suggested Gavin go ahead and get the testing done, it was free and it couldn’t hurt anything.
“While we were waiting on the Leber's test it came back positive for the Charcot-Marie Tooth Disease is with his mutation MFN2,” Allison explained. “That specialist didn't think it had anything to do with his eyesight but it was just a fluke and she wanted me to do a genetic counseling session. The lady(who was performing the genetic counseling) calls me and she said let me tell you now the Leber's test is going to be negative. There is no way he is going to have this mutation and the Leber's mutation. I am telling you there is no way.”
According to Allison, this ended up being a positive, with Leber’s, a patient does not recover any of their eyesight, they go blind. But it was during this time that Allison found out how rare Gavin’s particular case was.
“She said with her research, with his disease, only 6% have this mutation with MFN2 that effects their eyes,” Allison explained. “Charcot-Marie is not rare, it happens to people. It is his mutation that is rare and effects his eyes. The research she had very few people, 60% of them gain their vision back within 3 to 5 years. So that was promising to me.”
Gavin’s test for Leber’s came back negative. And now the only chance Gavin has to regain his eyesight and retake the baseball diamond is to travel to Berlin, Germany to see if he is a candidate for treatment at the Fedorov Restore Vision Clinic. Treatment that has a chance of giving Gavin back some of his eyesight and possibly getting him back to his game.
For the time being, Gavin is doing his best to maintain his school work and schedule among the COVID-19 pandemic and relearning how to learn without the use of his eyesight. He also has kept and maintained his job at Cash Savers in Monticello, where management has worked with him to ensure he can stay employed and live as normal a life as possible while learning to live with the loss of his eyesight.
Medical bills aren’t cheap, trips to Germany aren’t cheap either. As a result, the community has pulled together to support Gavin and his family as they jump through all he hoops necessary to travel out of country during the pandemic and to get Gavin the medical attention he needs. Planned fundraising events and other ways to donate are:
Hell or High Water Outdoors Raffle
5 man/ 2 day Specklebelly Goose Hunt in NE Arkansas (21-22 season) with JR Borchelt and Waterfowl Assassins Guide Service ($2,000.00 value)
Getting Gavin to Berlin Auction on Facebook
Donation items/services to be given to Janelle Harris by February 19th
100 Plates for Gavin’ BBQ Fundraiser and 100 plates for Gavin Fried Chicken Fundraiser have been modified and combined due to inclement weather.
Friday, Feb. 26, at 11 a.m. at Wallis’s BBQ Blues Shack, Monticello $10 BBQ plate with pulled pork bbq sandwich, potato chips, dessert, and drink will be served through lunch or are sold out.
At 5 p.m. 100 Plates for Gavin Fried Chicken Fundraiser will begin for dinner and will feature $10 BBQ plate with fried chicken, baked beans, cole slaw, and drink and will continue until all plates are sold.
Pig Out for Gavin Wear / Boston Butt Fundraiser
$35/each – contact information on Allison Wear’s Facebook page
Order by Monday, March 1st
$50 Bath and Body Works Raffle
$2/ticket – notify Allison Wear for tickets
Drawing on March 1st
Devlyn Fine Candle Fundraiser
Posted on Kayla Wear and shared on Allison Wear’s Facebook page
Information shared on Allison Wear’s Facebook page
Hunting Raffle – Gun and hunting supplies
Date has not been set
Union Bank – set up under Allison Wear/reference edical Donations
Simmons Bank – set up under Allison Wear/reference Donations for Gavin Wear
Paypal – paypal.me/ALLISONWEAR
GoFundMe – https://gofund.me/1f5b177a
J.D. Nations and Hell or High Water Outdoors Facebook Fundraiser (Gavin Wear treatment cost)
**Updated to reflect Gavin works at Cash Savers in Monticello, not Save Alot as previously reported.