KUSA - Turning 16 years old is right of passage for any teenager. The same is true for Standley Lake High School sophomore Jack Knight.
A self-professed movie and Lego buff, Jack enjoys lots of things most teenagers do: Spending time with friends, traveling and exploring Colorado’s great outdoors— but his time and loyalty lies with his best friend, Amber.
Amber is 9-year-old golden retriever and Jack’s full-time service dog. She became part of Jack’s life when she was just 18 months old.
“She does everything for Jack,” Angela Knight said, Jack’s mom. “She has gone everywhere with our family. She has crossed the finish line at Disney for a half marathon; she’s been to France; she’s been to Mexico -- It’s amazing.”
Jack and Amber are inseparable. Their favorite activity together is performing with the Standley Lake Gator Pride Marching Band.
“No other band has a service dog, I don’t think — we even has a special spot for her,” Jack said.
Amber's spot is right beside Jack, where she has been for more than 8 years.
“She doesn’t let Jack out of her sight, ever,” Angela said.
When Jack was a toddler, doctors diagnosed him with Duchenne Muscular Dystrophy, a genetic disorder characterized by muscle degeneration and weakness that is typically found in young boys.
It’s a progressive and often lethal condition. Less than 200,000 cases are reported each year.
“We noticed early on that Jack had enlarged calves, which is a sign of Duchennes— and then over time, he lost strength in his trunk and legs,” Angela said. “Most boys end up losing their ability to walk at age 12. Jack didn’t need a wheelchair until he was 14.”
The Knights attribute that success to the clinical drug trial, Translarna, which Jack began when he was just 5 years old.
The Knights are pushing for the FDA to review Translarna. Just recently, the FDA refused to review the drug due to a lack of data collected on it.
“We are heartbroken,” Angela said. “The FDA is accustomed to large data sets, but it is impossible with a rare disorder— and even harder when it’s for a specific genetic mutation that only effects approximately 12 percent of that rare disorder.
"What is really sad is that too many boys would have to die for them to get the amount of data the FDA is accustomed so,” Angela continued.
Now, the drug company PTC therapeutics is appealing the FDA’s refusal to consider the data collected so far.
“Which just means more waiting for us,” Angela said.
Meanwhile though, Jack is happy just living the life of a carefree teenager alongside his partner in crime.
These days, much of Jack and Amber’s time is spent with their marching band buddies.
“I really like competing, I just don’t like losing,” Jack said. “I play the baritone. My dad built a contraption on my wheelchair so that I could play it without having to hold it up."
Last month, Jack and the Marching Gators had their biggest performance yet at Standley Lake High School’s Homecoming game.
“It’s great because this is the only the second year we’ve had the band at the school,” Jack said. “Amber has a uniform that she wears too. It’s fun.”
While it’s been a fun ride so far, this season may be Amber’s last. After nearly a decade in service, Amber is getting ready to retire from being a service dog.
“It will be up to her when she wants to retire,” Angela said. “She has some health issues and we don’t want to push her.”
It’s a retirement that Jack doesn’t like to think or talk about. But for now, he’s just glad Amber is still by his side, the same place she has always been.
“I’ve needed her more times than I can count,” Jack said.
But even though Amber may be hanging up her service dog vest too, she will still be nearby.
“Even after she retires, she will stay in the family,” Angela said. "But she will be hard to replace!"
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