Parents Hold Fundraising Walk for South Dakota Children with Myasthenia Gravis
September 22, 2014
Carter has been intubated 11 times. He’s just 6 years old.
Hattie, 3, can barely open her eyes.
Josh’s muscles gets so fatigued that he slurs his words, and the 40-year-old has a difficult time reading bedtime stories to his daughter.
All three Spearfish residents have been diagnosed with types of Myasthenia Gravis, often called the snowflake disease because no two cases are alike and symptoms very widely.
The disease is rare, only about 20 in 100,000 people have MG. In children, it’s extremely rare and incredibly severe. That’s why Hattie’s mother, Kelli Ewert is the driving force behind the upcoming 2014 South Dakota MG Walk to raise awareness about, and funding for, MG.
“We can’t change the world, but we can definitely spread the word in our state of South Dakota,” she said.
MG symptoms ebb and flow; one day the symptoms can be so severe the patient needs hospitalization, while the next month the patient just has slight muscle fatigue.
Josh Fritz, a co-owner of Crow Peak Brewery, has a relatively minor version of the disease at this time, mostly experiencing fatigue and a lack of muscle strength that can affect his speech.
He wasn’t always so lucky.
Diagnosed in his mid-20s, the disease quickly progressed, and Josh was heavily medicated and even had to sleep sitting up at night so he didn’t aspirate on his own saliva. Now he’s on no medications, and the disease doesn’t have much effect on his daily life.
Hattie and Carter aren’t quite as fortunate. The disease can often run their lives, requiring trips to Denver or Sioux Falls for treatment, hospitalization or full-time care by their parents.
And sometimes the treatment that worked last month has no effect this month.
Hattie was diagnosed last summer. As with other patients, she varies on where she is on the spectrum. Some months, she can barely open her eyes due to muscle fatigue or she struggles to sit still due to the pain and weakness in her legs, while other times, the light pain allows her to run around like any other 3-year-old.
Hattie’s mother, a nurse, met Kristan Alfson when she helped deliver her son Carter. The two women became fast friends, a friendship that has grown only closer after their children were diagnosed with the same rare disease.
Alfson and Carter’s battle against this disease has been difficult.
Diagnosed nearly two years ago, Carter has had numerous respiratory failures. His mother lives in a state of anxiety whenever she hears him sniffle or sneeze. The littlest symptom could end up with Carter hospitalized.
“My son has suffered hugely and getting this diagnosis was the furthest thing from being easy,” Alfson said.
There are no longer any outreach groups for muscular dystrophy in South Dakota or North Dakota, which makes it more difficult for the families of those with the disease to find the support they need locally.
“I’ve almost lost Carter time after time after time,” Alfson said. “As a parent, it doesn’t get easier; it gets harder each and every time. I’ve been there every time he has failed, and it’s gut wrenching. How many times is he going to be able to be on (a respirator) and come up?”
Despite the often debilitating effects of the disease, Carter is a fighter.
“He has overcome far more than most people will have to in their entire life, and he’s only 6,” his mother said.
There is no cure for MG and few people have even heard of the disease, which is why these three families are joining with others to host the walk and fundraiser about MG.
A silent auction will be held from 4 p.m. to 10 p.m., Sept. 20, at Crow Peak Brewery. The MG Walk will be from 9 a.m. to noon Sept. 21. Registration is at 9 a.m. and the walk, either a 1- or 3-mile course, starts at 10 a.m.
For more information, visit MGWalk.org/SouthDakota
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