The 11-year-old boy is off to Hawaii on Friday thanks to the Children’s Wish Foundation. He celebrated with the family, the foundation, and staff at the Esso on Robie Street on Monday, his 11th birthday.
“At first, I wanted to go to Juno Beach in Normandy,” said the soft-spoken young boy. But it was recent terrorist attacks that saw Jax change his mind.
“Then I wanted to swim with dolphins. That’s what I’m looking forward to most.”
For a week and a half, Jax and his mom, Lana, his cousin Sadie Debow and aunt Melissa McMackin-Densmore, will spend time in Hawaii, swimming with dolphins, visiting Pearl Harbour, going parasailing, and even spending time on the beach.
“We’ll see giant sea turtles,” Jax smiled.
When Jax was two, his family rushed him to the hospital where he remained for three and a half months. In that time, he underwent comprehensive testing and close to 15 surgeries.
“He went undiagnosed for an extreme amount of time, even with all the testing that was done,” said his mom. “Even now, his DNA is in Germany so we can try to figure out what’s causing this.”
Jax was diagnosed only four years ago with dysautonomia – a medical condition where the autonomic nervous system malfunctions. The autonomic nervous system controls the automatic functions of a person’s body they don’t think about – such as heart rate, blood pressure, digestion, and kidney function.
“What everyone else’s autonomic nervous system does, his doesn’t do without medication,” said Lana.
It’s when Jax’s body temperature lowers that causes panic as he could drop into a state of hypothermia. It can also cause strokes or even heart attacks, “and they can happen at two or three in the morning, or two or three in the afternoon,” said Lana.
Relying on medications, Jax takes about 15 tablets on a daily basis.
Lana called his Hawaii wish being granted “bittersweet.”
“I think of all the trips that were cancelled at the last moment because he was sick, and I think about what he’s missed out on over the years – hockey tournaments, baseball games, Christmas concerts … he’s missed so much,” she said.
“So this is a reward in that sense. It’s going to be beautiful, but we suffered a lot to get to that point.”
Twitter: @TDNRaissa
ABOUT DYSAUTONOMIA
- A malfunction of the autonomic nervous system, which automatically controls functions of the body such as heart rate, blood pressure, body temperature control, and kidney function
- Dysautonomia can have various results, from lightheadedness and fainting, to more severe cases such as death
- More than 70 million people worldwide are diagnosed with dysautonomia, and any age, gender or race can be impacted
- There is currently no cure for dysautonomia
- There are different forms of dysautonomia – postural orthostatic tachycardia syndrome (impacts one out of 100 teenagers), neurocardiogenic syncope (most common form, impacting tens of millions throughout the world), multiple system atrophy (a fatal form occurring in adults aged 40 and up affecting about 350,000 people)
Source: Dysautonomia International
The 11-year-old boy is off to Hawaii on Friday thanks to the Children’s Wish Foundation. He celebrated with the family, the foundation, and staff at the Esso on Robie Street on Monday, his 11th birthday.
“At first, I wanted to go to Juno Beach in Normandy,” said the soft-spoken young boy. But it was recent terrorist attacks that saw Jax change his mind.
“Then I wanted to swim with dolphins. That’s what I’m looking forward to most.”
For a week and a half, Jax and his mom, Lana, his cousin Sadie Debow and aunt Melissa McMackin-Densmore, will spend time in Hawaii, swimming with dolphins, visiting Pearl Harbour, going parasailing, and even spending time on the beach.
“We’ll see giant sea turtles,” Jax smiled.
When Jax was two, his family rushed him to the hospital where he remained for three and a half months. In that time, he underwent comprehensive testing and close to 15 surgeries.
“He went undiagnosed for an extreme amount of time, even with all the testing that was done,” said his mom. “Even now, his DNA is in Germany so we can try to figure out what’s causing this.”
Jax was diagnosed only four years ago with dysautonomia – a medical condition where the autonomic nervous system malfunctions. The autonomic nervous system controls the automatic functions of a person’s body they don’t think about – such as heart rate, blood pressure, digestion, and kidney function.
“What everyone else’s autonomic nervous system does, his doesn’t do without medication,” said Lana.
It’s when Jax’s body temperature lowers that causes panic as he could drop into a state of hypothermia. It can also cause strokes or even heart attacks, “and they can happen at two or three in the morning, or two or three in the afternoon,” said Lana.
Relying on medications, Jax takes about 15 tablets on a daily basis.
Lana called his Hawaii wish being granted “bittersweet.”
“I think of all the trips that were cancelled at the last moment because he was sick, and I think about what he’s missed out on over the years – hockey tournaments, baseball games, Christmas concerts … he’s missed so much,” she said.
“So this is a reward in that sense. It’s going to be beautiful, but we suffered a lot to get to that point.”
Twitter: @TDNRaissa
ABOUT DYSAUTONOMIA
- A malfunction of the autonomic nervous system, which automatically controls functions of the body such as heart rate, blood pressure, body temperature control, and kidney function
- Dysautonomia can have various results, from lightheadedness and fainting, to more severe cases such as death
- More than 70 million people worldwide are diagnosed with dysautonomia, and any age, gender or race can be impacted
- There is currently no cure for dysautonomia
- There are different forms of dysautonomia – postural orthostatic tachycardia syndrome (impacts one out of 100 teenagers), neurocardiogenic syncope (most common form, impacting tens of millions throughout the world), multiple system atrophy (a fatal form occurring in adults aged 40 and up affecting about 350,000 people)
Source: Dysautonomia International
