Union City boy only person in world who lives with rare disorder
UNION CITY, Tenn. — One local boy is living with an extremely rare disorder — so rare it doesn’t even have a name.
Hudson Hayes is a 6-year-old boy from Union City who loves wrestling, but he isn’t your normal little boy.
He has a very rare skeletal dysplasia syndrome, with a defect in the B3GAT3 gene. His parents say he is the only one in the world who is confirmed to have his certain mutation.
Michelle Hayes, Hudson’s mom, said they have been searching for answers since he was born.
“It was a roller coaster. One minute they would say ‘This is serous, we don’t know what’s going on,’ to ‘We just think it’s his thyroid,” she said as she reflected on the time right after Hudson was born.
“They didn’t know if he was going to live or not,” Scotty Hayes, Hudson’s father, said. Scotty had just left for a deployment with the Army National Guard when Hudson was born.
Because of the mutation, Hudson has a number of side effects including joint dislocations, soft bones and scoliosis, which prevent him from walking on his own.
“He just wants to be like everybody else and play with his big brother,” Michelle said.
His parents say they have gone through more than a dozen hospitals, hundreds of tests and a number of specialists, but there isn’t a lot of information out there on producing the protein he needs.
“The doctors have done research when you have too much, but there is no research when you don’t have enough,” Michelle said.
Hudson was able to walk on his own for the first time in a swimming pool last year but can only be out of his thoracic brace two hours a day.
Despite the challenges, his parents believe one day Hudson will be able to walk on his own.
“It’s not really an option. We can’t see it any other way,” Scotty said.
Hudson’s family will head to Delaware next month to see another doctor who specializes in skeletal dysplasia syndrome.
His family posts regular updates on their Hope for Hudson Facebook page if you would like to follow his story.
If you would like to donate to Hudson’s cause, here is some information.
There are numerous ways we receive donations for Hudson. If anyone would love to give, these are ways to give to help with his expenses.
1) Any donor can mail check/cash to the West Tennessee Healthcare Foundation, 620 Skyline Dr., Jackson, TN 38301.
If it is a check, they need to denote the fund name on the memo line, which is Hudson’s Hope Fund.
If it is cash, they need to include the donor information and the fund name on a note.
2) The donor can go online to www.wth.org/foundation/give
This will take them straight to the donation site. The donor will need to fill in everything that has a red asterisk.
Beside “Designation,” the donor needs to use the drop-down arrow and type the fund name, “Hudson’s Hope”
Simply click submit, and a receipt will be emailed to the donor
3) The last option is to stop by our office. Our physical address is different from our mailing address. We are located at 74 Directors Row, Jackson, TN 38305.
