Mid-Missouri boy fights to find treatment and cure for fatal disease

4 months 4 weeks 1 day ago November 24, 2016 Nov 24, 2016 Thursday, November 24 2016 Thursday, November 24, 2016 3:49:00 PM CST in News
By: Kiara Ealy, KOMU 8 Reporter
loading

COLUMBIA- Nine-year-old Aidan Gilbert appears to have a number of reasons to be thankful. He comes from a loving family and tries his best to give back to others. But there's one thing Aidan has been passionate about for the last two years more than anything, and that's finding a cure for Duchenne Muscular Dystrophy (DMD).

Aidan and his father, Eric, first became involved with finding a cure for DMD after watching a CNN video of a mother, Jenn McNary, who has two sons with DMD. Only one of the boys qualified for a gene therapy trial.

"We just want to get rid of DMD," Aidan said.

According to the Muscular Dystrophy Association, DMD is a genetic disorder characterized by muscle degeneration and weakness. The disease primarily affects boys and is one of nine types of muscular dystrophy. 

Although it's become more common for those with DMD to live into their 30s, there's currently no cure. In September, the Food and Drug Administration approved eteplirsen (Exondys 51), a drug used to slow the progression DMD.

Aidan's father, Eric Gilbert, said he tried to put himself in McNary's shoes.

"As a parent, I couldn't imagine what it would be like for one of my sons to have this treatment and the other son not to have it," Eric Gilbert said. "And that's basically what she had to wrestle with - one boy getting a lifesaving treatment, knowing that it's saving his life and the other boy didn't qualify for the trial."

From there, the Gilberts got involved by reaching out to families struggling with DMD. Aidan wrote letters to the FDA, called senators,visited the FDA in Washington D.C., where he became friends with those living with DMD, and created a Facebook page- Giving to Causes Greater Than Ourselves.

"I just was compelled to help other people that weren't as lucky or fortunate or blessed to have healthy children like I was," Eric Gilbert said.

One mid-Missouri doctor has shed light on the treatment and possible cure of DMD. Dr.Dongsheng Duan of MU Health found a cure for DMD in dogs.

"To treat this disease, you have to deliver your therapeutic gene to every muscle in the body, and that is a gigantic task," said Dr. Duan.

After successfully using a virus to treat Duchenne in dogs, Duan feels treatments, such as Exondys 51, are ready to for use in affected children with DMD.

Now that Exondys 51 is approved by the FDA, Aidan hopes to still keep pushing for the treatment and an eventual cure for DMD.

"We want to make it so every boy with Duchenne can have it - poor boys, rich people and everybody who has Duchenne just be able to have this drug and hopefully have a cure too that will just rid of the disease," Aidan said.

More News

Grid
List
COLUMBIA - Columbia Public School teachers could see a significant increase in salary for the coming school year. The... More >>
36 minutes ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 7:22:00 PM CDT in News
JEFFERSON CITY (AP) — A Missouri senator says he's moving out of a room he rents from a lobbyist following... More >>
40 minutes ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 7:17:23 PM CDT in News
JEFFERSON CITY (AP) — The Missouri House has passed stricter requirements for tracking fetal tissue after abortions. The... More >>
45 minutes ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 7:13:00 PM CDT in News
MID-MISSOURI - There were 36 reported cases of salmonella in Mid-Missouri Monday, with the majority of cases reported out of... More >>
54 minutes ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 7:04:00 PM CDT in News
COLUMBIA - Columbia Public Works is requesting community members complete a survey on new markings for cyclists at intersections in... More >>
1 hour ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 6:40:00 PM CDT in News
COLUMBIA - Wind, water and solar power are all elements that usually come to mind when the words 'renewable energy'... More >>
1 hour ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 6:02:00 PM CDT in News
COOPER COUNTY - Two people died during a plane crash on Highway 98 near Boonville around 1:40 p.m Monday. ... More >>
2 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 5:03:00 PM CDT in News
ARGYLE - For years, the Rock Island rail line carried trains across Missouri, straight through towns like Eldon, Freeburg and... More >>
4 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 3:50:00 PM CDT in News
KANSAS CITY (AP) — A teenager who was shot by a Kansas City store clerk who thought the boy was... More >>
4 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 3:39:00 PM CDT in News
BOONVILLE- What began as a joke between two friends inspired an event that raised money and awareness for a... More >>
5 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 2:49:00 PM CDT in Continuous News
BALLWIN, Mo. (AP) — St. Louis County authorities are investigating an apparent murder-suicide involving a couple in their 80s. ... More >>
5 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 2:35:00 PM CDT in News
ST. LOUIS (AP) — Police say a 51-year-old St. Louis-area woman died while she was sleeping when she was struck... More >>
5 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 2:29:00 PM CDT in News
EUREKA, Mo. (AP) — A Mexican wolf born this month at a wildlife center in suburban St. Louis is offering... More >>
5 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 2:17:00 PM CDT in News
COLUMBIA - The Boone County Community Services Department recently released its 2016 Annual Report and Program Directory, which highlights where... More >>
6 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 1:34:00 PM CDT in News
COLUMBIA - President Donald Trump's proposed spending plan for 2018 significantly reduces funding for a range of executive departments, from... More >>
7 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 12:13:00 PM CDT in News
FULTON - Two men are on the run after assaulting a man in his home and stealing cash and other... More >>
8 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 11:23:00 AM CDT in News
JEFFERSON CITY - Boone County and Jefferson City discussed an agreement to respond as backup for each other's 911 call... More >>
8 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 11:07:00 AM CDT in News
COLUMBIA - A new report shows that only about one in every 10 Americans eats enough fruits and vegetables. Just... More >>
8 hours ago April 24, 2017 Apr 24, 2017 Monday, April 24 2017 Monday, April 24, 2017 11:06:00 AM CDT in Weekly Wellness
Columbia, MO
Broken Clouds 74°
8pm 68°
9pm 65°
10pm 63°
11pm 61°

Select a station to view its upcoming schedule:

Coming Up Next

7:00p
The Voice
9:01p
Taken
10:00p
KOMU 8 News @ 10
7:00p
Supergirl
8:00p
Jane the Virgin
9:00p
KOMU 8 News @ Nine on The CW

Tonight's Schedule

7:00p
The Voice
9:01p
Taken
7:00p
Supergirl
8:00p
Jane the Virgin
9:00p
KOMU 8 News @ Nine on The CW
9:30p
Seinfeld