'He is my hero' | Lenoir City
family seeking help for son with rare condition
Hayden Scarbrough is
a 10-year-old boy with Spinal Muscular Atrophy or SMA. His family is
running into roadblocks with his treatment and pleading for help.
LENOIR
CITY, Tenn. wbir.com— A Lenoir City family is struggling to
help their youngest son who suffers from Spinal Muscular
Atrophy, or SMA, get the help he needs.
From difficulties with mobility to troubles with insurance, it's been a tough time. Now, they are pleading with the community to help.
Hayden Scarbrough is 10 years old and is the light of his
family's life. He loves to make people laugh more than
anything.
"He can make jokes just like that," said his dad, Chris
Scarbrough. "His personality is awesome."
It's safe to say Hayden's parents would do anything for him.
"Hayden means the world to me," said Tonya Scarbrough,
Hayden's mother. "I'd give my life for him. He is
everything. He is my hero."
Hayden was diagnosed with Spinal Muscular Atrophy when
he was 3 and a half years old. It's a progressive
disease that weakens muscles in the body.
At
just 10 years old, his body is already severely
affected. He spends much of his time in a wheelchair.
"He lost the ability about two years ago to completely
walk," Chris said.
Getting the diagnosis at such a young age was a pivotal
time for the family.
"After getting diagnosed it like tore my life apart
because knowing that you couldn't help a child and take
the pain away that the child was feeling, and you being
mom you're supposed to be able to do that," Tonya
explained.
Many basic activities like visiting the park are now an
extreme challenge for Hayden. He wishes he could get on
the swing or slide, instead of just watching other kids
play.
The Scarbroughs know that the effects of SMA can't be
reversed, but access to certain medicine and equipment
could help Hayden's condition slow down. Getting those
life-saving materials, though, has been a struggle.
"We've had to battle with the insurance company with
them only having to cover one out of the four that he
needed," Tonya Scarbrough said. "It's just like a
roadblock everywhere we turn."
Without the help he needs, Hayden's family could be
forced to move from their hometown to seek help.
"I
don't want to move because I don't want to leave friends
and family behind," Hayden Scarbrough said.
Even through his toughest times, Hayden's faith has
never wavered.
"Hayden is a strong believer in prayer," his mom
nodded.
"Praying in the day helps me have faith," Hayden
added.
His dad feels the same way.
"They say sometimes that dads are heroes of kids,
[but] it's backwards here," his dad said.
If you would like to help
Hayden and his family get the life-saving care and
treatment he needs, there is a GoFundMe
set up here where you can
do so.
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4/12/21