Six-year-old Forestdale boy fights rare disease

FORESTDALE — Mason Wedge should be joining hundreds of other Vermont kids entering first grade this week for a year of educational adventures.
But a serious disease known by three capital letters — DKC — is shackling him to his Forestdale home and leaving him and his family praying for a cure, or at least a critical bone marrow transplant.
“DKC’ is the acronym for Dyskeratosis Congenita, an inherited disorder that includes such early symptoms as abnormal skin pigmentation, thin nails, white patches inside the mouth, a breakdown in the immune system, fatigue and loss of appetite. Of more serious concern, however, is that DKC patients are predisposed to bone marrow failure, some cancers and lung problems.
Symptoms typically surface in patients between ages 5 and 10. Mason just turned 6 on Aug. 20.
To say the young lad has had a rough year would be an understatement. His dad, Billy J. Wedge, passed away just two weeks prior to Mason’s DKC diagnosis on April 20. The family has Addison County roots, previously residing in Bristol and Salisbury.
Mason has good days and not-so good days, when he is tired, sick, pale and has no appetite to speak of.
He has been feeling like a pincushion these days, according to family members.
“Every Thursday, he has to go to the University of Vermont Medical Center to have blood drawn,” said Lisa Tatro, Mason’s great-aunt who has been organizing fundraisers to help defray family expenses related to the boy’s treatment.
“He’s sick of needles,” she said.
His mom, Jennifer Wedge, has taken leave from her longtime job as a caregiver at the Shard Villa senior care facility in Salisbury, in order to better focus on Mason and his three half-siblings. They are currently staying with family in Forestdale as they regroup to confront tragedy and illness.
“It’s been very tough on her,” Tatro said.
Mason and his mom will be heading to Boston Children’s Hospital on Sept. 11 to meet with a team of doctors that will outline some of the young patient’s medical options. That menu will likely include a bone marrow transplant, according to Tatro. Future treatment will require Mason and his family to do more traveling and thus rack up fuel, food and lodging expenses that medical insurance won’t cover. So Tatro and others have been setting up donation jars and scheduling events to generate some cash.
For example, an Aug. 5 motorcycle ride from Brandon into Middlebury raised more than $700 on what was a very rainy day.
“Water was running off of all of them, and they didn’t complain,” Tatro said of the riders.
An Aug. 19 dance at Middlebury Veterans of Foreign Wars Post 7823 generated around $1,300. The event also included a silent auction, bake sale, face painting and other activities.
Mason’s supporters have raised around $2,600 of the $5,000 they’d like to bank for the family’s upcoming expenses. Tatro wants to organize another dance and give it a little more pre-publicity. She’s talking to the local senior center in Forestdale about hosting a community potluck dinner to benefit Mason. A bottle drive is also in the works.
Mason is on a waiting list for a trip to Florida through the Make A Wish Foundation. The foundation is also trying to find Jennifer Wedge and her children some housing of their own, according to Tatro.
Meanwhile, Jennifer Wedge is taking as many precautions as possible to make sure Mason doesn’t get sick. It’s meant a pretty solitary life for the child, but it could be disastrous for his health if he were to catch a cold from a friend. The local school district is looking to set Mason up with a tutor.
“It tears me apart,” Tatro said of Mason’s health situation.
Jennifer Wedge said Mason is generally in good spirits, though at 6 years old, he isn’t fully cognizant of the hurdles that lay ahead. But he clearly has a lot of support in his quest for a clean bill of health.
“I just keep going,” Jennifer Wedge said of her approach to the challenges the family is facing. “It’s pretty emotional for everyone.”
The hardest part right now is the unknown. She wants answers.
“It’s a waiting game,” Wedge said.
People wanting to contribute to the Wedge family can do so by:
•  Logging on to gofundme.com/Mason-s-Mission, to donate online.
•  Write a check payable to “Mason 6,” and send it to Jennifer Wedge, P.O. Box 253, Brandon, VT 05733.
•  Pop a few bucks in donation jars that can be found in such local businesses as Shafer’s Market & Deli in Middlebury and Brandon House of Pizza.
Reporter John Flowers is at [email protected].

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