A Smiths Falls single mom is navigating the unknown after her nine-year-old son was diagnosed with a a neurological condition affecting the brain and spinal cord.
In January, Elyse Smith’s nine-year-old son Lincoln was diagnosed with Chiari 1 malformation.
Smith says that effectively means Lincoln’s skull is too small for his brain, and her son has exposed brain matter at the back of his neck.
That’s taken away his ability to play hockey and soccer and run around with his friends, as any fall could be fatal.
The symptoms started last summer when he complained of headaches during a soccer game in August and was pulled from the game.
This was abnormal for Lincoln and the headaches persisted, with Smith taking Lincoln to the doctors.
Smith says her concerns were initially dismissed, and written off as potential stress as a new school year approached, growing pains or dehydration.
It wasn’t until she pushed for further testing, and an MRI at the Children’s Hospital of Eastern Ontario in December, did they uncover the abnormalities and eventual diagnosis.
Smith says it was a devastating blow as Lincoln faces a harsh new reality.
Lincoln played goalie for the Smiths Falls U9 Tier 2 Bears, and according to Smith, has a hard time staying still.
She describes her son as extremely active, so the change in lifestyle has been hard for him.
Smith says Lincoln still tries to find joy in other avenues.
The single mother of two says Lincoln’s 13-year-old sister Kyanna has been great with him, playing cards and engaging in activities he can do.
She said her daughter is struggling to see her brother’s battle, and she was recently diagnosed with epilepsy.
Lincoln’s awaiting brain surgery that Smith hopes allows him to return to playing the sports he loves.
Recovery could take between 1-3 months and potential side effects or complications could result in Lincoln having to relearn how to walk and talk.
Smith was told the surgery could happen in June but no date has been confirmed yet.
If there’s one overarching message she wants to offer parents, it’s make the most noise you can.
A family friend has set up a GoFundMe to help the Smith family during this time.
You can listen to the full interview below.
Story by Grant Deme
