Baby Owen McHardy is battling a disease that could take his life
At a glance, Owen McHardy might seem like a normal child but at only a year old, Owen is battling a disease that is preventing him from crawling and lifting his arms and will eventually take away his ability to walk, stand, sit, eat, swallow, and breathe.
Owen's mother Shawnna, daughter of Vankleek Hill's Debbie and Keith McPherson and sister to Mathew, Jamie and Scott McPherson, is currently living in Ottawa with her husband Kevin and their three children, Katie, Liam, and little Owen. With numerous hospital visits and a special diet, medical bills pilling up for the McHardy's and are reaching out to family and friends for support to help Owen with his battle with Spinal Muscular Atrophy.
According to information provided by Shawnna, Spinal Muscular Atrophy (SMA) is a degenerative disease that affects voluntary muscles that is mostly found in children, six months after they are born. A child inherits the trait from their parents, who both have to be carrying the gene. This incurable disease is the leading killer of children under the age of two and occurs in one out of 6,000 births.
There are four types of SMA and each is diagnosed based on the child's symptoms and when the symptoms start occurring. Owen was diagnosed with type one, the most severe case of SMA.
"The mental strength is there, but your body is failing you," said Shawnna.
Types one and two will prevent a child from crawling, sitting, swallowing and 50 per cent of children will have to have respiratory support.
Shawnna and Kevin realized that something wasn't normal with Owen when he reached two weeks old.
"Owen could never stand on his legs if you held him up, he couldn't bear weight on his legs. His legs would just flop," said Shawnna.
Shawnna and Kevin took Owen to the doctor where they set up an appointment for Owen to have a muscle and nerve test. His test results were not satisfactory. A blood test to test for SMA was then ordered. At eight months old, Owen was diagnosed positive for SMA type one. One in 40 people are carriers of SMA, and both Shawnna and Kevin just happened to carry the gene.
"We pretty much knew he had it [SMA] before he was diagnosed," said Shawnna.
Now at 12 months old, Owen and his family are trying everything to help reduce the symptoms.
While there is no cure, and no treatment for SMA, Owen's parents are testing out trial treatments that could reduce his symptoms and improve his quality of life.
Owen is currently on a special diet that doctors can't recommend since they have not tested the diet or its side effects. However, those dealing with SMA say this diet will show improvements.
This vegan-like diet removes all meat and milk from Owen's diet and is replaced with an amino acid formula. Vitamins and other supplements are also part of Owen's special diet.
"Since on the diet, Owen can now sit on our lap for one minute. He used to only be able to sit for six seconds before flopping. We are seeing an improvement," said Shawnna.
"Owen can move his legs more, and he can raise his arms a little higher than he used to," she continued.
Another trial treatment that is being studied is gene therapy that will alter the SMA gene, and return it to normal. This study begins in December and will hopefully lead to a cure for SMA.
With Owen's special diet, doctor's appointments and hospital visits, costs are growing for Shawnna and Kevin who spend $500 a month on Owen.
"The formula alone is $250 a month," said Shawnna.
Shawnna and Kevin have started selling bracelets for Owen. With each bracelet bought, 25 per cent of the donation will go toward SMA research and the rest will go toward supporting Owen with the diet that is improving his quality of life, medical appointments, and a wheelchair.
If you would like to help Owen in his fight with SMA, please visit www.gofundme.com/owensfight.
Every dollar donated will help improve this little guy's quality of life, and will remind the McHardy's that they are not alone.