Sooke mom asking for help after second child diagnosed with debilitating condition
A Sooke mother is looking for other people diagnosed with the same rare condition as her oldest son: (Submitted)
SOOKE - A Sooke mother is desperately searching for answers after her son was suddenly diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS).
After being diagnosed a month ago, 15-year-old Nathan Alexa has been out of school and confined to his bed by nausea, headaches, and dizziness.
Unfortunately, for the single mother of four, caring for a sick and suffering child is something she is familiar with. Two years ago, her youngest son, Landen, was diagnosed with a rare and severe disease. After finally getting the eight year-old's Systemic Juvenile Idiopathic Arthritis under control, she says she is back where she started.
"Victoria General Hospital is a great medical facility for sick children, but it is my least favouite place to me," said Nathan's mom, Jillian Lanthier.
"Being in the emergency room was just like dejavu," said Lanthier. "Here we go again."
The family had just returned from Landen's dream trip to Disneyland, when Nathan started feeling sick. The Grade 10 student is now homeschooled and is being supported by visiting school district teachers.
"After his birthday, Nathan just looked at me and said 'Mom when am I going to feel better,' and for the first time in his 15 years, I didn’t have an answer," Lanthier said.
Since his diagnosis, Lanthier says she's had to quit her job to stay home to take care of Nathan, while balancing Landen's bi-weekly hospital appointments.
So far Lanthier says they haven’t had any luck with treating Nathan's POTS with medication. The teen needs to see a specialist, but the clinic at BC Children's Hospital has a six month wait list.
Lanthier has started a GoFundMe page to raise money to take Nathan to a private clinic in the United States.
"I desperately want to know more about POTS, our family doctor was shocked," Lanthier said. "They said they knew about POTS but didn’t know enough to treat it."
She also hopes that the page will connect her with other people who have, or are knowledgeable about the condition.
Nathan's GoFundMe page can be found online here.