FAIRBORN — A Fairborn family is doing all they can to help their baby boy learn to walk, and his aunt has organized a fundraiser for this Saturday to assist them as they continue to encourage Emmett, one step at a time.
Despite reassurances from his pediatricians, Amy and Doug Keeton, became concerned about their son’s physical development and his inability to put weight on his legs to stand when at 18-months-old he had never pulled to stand.
“We knew something was wrong because he is very intelligent and should have at least been trying,” his mother said. “He also had tremors in his hands and was slow at crawling. And he had no reflexes in his legs.”
The family was referred to a neurologist for genetic testing. In September 2013, just three months before his second birthday, he was diagnosed with the genetic disease Spinal Muscular Atrophy Type II. X-rays showed that Emmett also has scoliosis, a complication of SMA.
According to the National Institute of Neurological Disorders and Strokes, SMA is a rare, hereditary disease that causes weakness of the voluntary muscles in the arms and legs of infants and children. The disorder is caused by an abnormal or missing gene which is responsible for the production of a protein essential to motor neurons. Without this protein, lower motor neurons in the spinal cord degenerate and die.
Type II usually begins between 6 and 18 months of age. Children with Type II may be able to sit and some may be able to stand or walk with help.
The Keetons had never heard of this incurable disease.
“It’s a progressive disease, similar to Muscular Dystrophy, so he will have gradual weakening of his muscles,” Amy Keeton said. “One of this things that really struck us is about one in 47 Americans are carriers and most don’t even know it, and a lot of times there is no family history of it. It’s a recessive gene so both parents have to be carriers.”
The doctors have told Emmett’s family that he more than likely will never walk and will probably be in a wheelchair the rest of his life.
“His parents have so much more hope for him than that,” said Amy’s sister, Lisa Dukes. “Our goal is to get him walking.”
Family members describe the 2-year-old as a little jokester who loves to sing and dance. His aunt says he can sing his ABC’s and can count to 10 in Spanish.
“He’s so happy and so smart,” she said. “He has always been such a good baby. He’s so sweet, I just adore him.”
Currently, Emmett’s only way of getting around on his own is to crawl, but his low muscle tone makes this a slow, tedious task for him and he gets discouraged.
“He is one of the most patient 2-year-olds I’ve ever met,” Keeton said. “He tells you things are hard and tries to the best of his abilities but I think he already knows his limits.”
Doctors have recommended some special equipment like the standing wheelchair, or “standing bike” as Emmett calls it, that he uses once a week at physical therapy. Leg and hip braces have also been recommended to help strengthen Emmett’s leg muscles. Along with the braces, he will need special shoes to fit over them, and all of this equipment will need to be replaced as he grows.
With all of his new special equipment, their family is going to need a handicap accessible house and vehicles as well.
“The medical bills have really started stacking up on them, and insurance only covers so much of it,” said Dukes, who started an online fundraiser for the Keetons and organized Saturday’s event. “My goal for this fundraiser is to help them get through all of these new challenges they are facing, but also to raise awareness for this devastating disease.”
The “Encouraging Emmett - One Step at a Time” fundraiser will be held from 6:30-11 p.m. Saturday, April 5 at the IUE Union Hall located at 1675 Woodman Drive in Dayton. This is an all-you-can-eat spaghetti dinner with a 50/50 raffle, door prizes, raffle prizes, games of chance and games for the kids. Featured entertainment will be The Linda Prevo Band.
Tickets are $10 for adults in advance or $12 at the door, $5 for children under 12 ($7 at the door), ages 5 and under get in free. All tickets include food, soft drinks and entry into door prize raffle. Adult tickets also include one free beer for guests over 21 years of age. Message the event page on Facebook to get advance tickets at https://www.facebook.com/EncourageEmmett.
Monetary donations can be made at http://www.gofundme.com/EncouragingEmmett or mailed to PO Box 3168, Fairborn, OH 45324.