Locals raising thousands for eight-year-old battling rare disease

By Scott Roblin & Taylor Chartrand
December 5, 2018 - 5:50pm Updated: December 5, 2018 - 7:22pm

 

MEDICINE HAT, AB – It’s not a battle eight-year-old Max Seidel planned to be in, but the youngster is facing an uncertain future head on.

It all started last month, when Max’s mother Connie Edler noticed a purple dotted rash all over her son’s body.

She took him to a walk-in clinic but was later sent home after a doctor ordered blood counts, however things took a turn for the worse shortly after.

Three hours later, Max was told to head straight to the emergency room after he was found to have no platelets and was told not to fall or bump into anything as he had lost the ability to clot blood.

The pair were flown to Alberta Children’s Hospital in Calgary, where Edler said she was given some harrowing news.

“He was bleeding internally, so the rash that he had wasn't a typical skin rash,” said Edler. “It was actually blood vessels underneath his skin that were bursting, and they were bursting all over inside his body.”

Max was diagnosed with a rare genetic condition called atypical Hemolytic Uremic Syndrome, which affects less than 100 people across Canada.

As a result of a genetic disorder, the body’s immune system attacks both unhealthy and healthy cells, which can lead to a wide variety of issues affecting the body’s organs.

Most cases involve some type of kidney failure and Edler said Max’s case is extremely rare even for the top specialists in the field.

“These two kidney specialists that we're dealing with are world renowned and they are amazing,” she said. “They've only ever seen 100 cases of atypical, and within those 100 they have never seen a profile quite the way my son is presenting.”

Since he was initially admitted in mid-November, Max has been battling the disease in a hospital bed at the Alberta Children’s Hospital, requiring dialysis for 21 hours a day.

Edler said he’s had his good and bad days in hospital, but added it’s especially tough seeing him confined to a bed with the holiday season approaching.

“Some days he's a typical eight-year-old boy, and he's laughing and playing with his brother,” she said. “And then other days, his face is so swollen that he can barely open his eyes and he just lays in bed wondering why he's so sick and why he can't just play like a normal kid.”

Seeing a post from Edler circle around Facebook, fellow Medicine Hat mom Janelle Hullah decided to reach out.

Hullah said seeing a family with kids around the same age as hers go through something so traumatic struck a chord.

“It just hit close to my heart because I have two little boys, and having a sick child like that is every parent's worst nightmare,” said Hullah.

Hullah created a GoFundMe page on November 28 titled ‘Max the Warrior’ in the hopes of raising money to cover expenses like travel, food, gas, childcare, and lost wages.

“He's a little fighter from what I hear, I've never met him,” said Hullah. “But, I heard that he's a little warrior so that's why we called it 'Max the Warrior.'”

As of Wednesday afternoon, the GoFundMe page has raised close to $3,000 of its $10,000 goal.

This comes as Edler and her family are considering moving to a costly experimental drug, as aHUS often returns even in those receiving a kidney transplant.

“The tricky part about that is he would need four doses in the first month and then a dose every two weeks for the rest of his life,” said Edler. “But, each dose is between $10,000 and $20,000.”

Forty-six donations had been made as of Wednesday, with many of those lending their support being complete strangers.

Edler said it’s something that has touched the hearts of not just her and Max, but their entire family.

“I've had many, many breakdowns just at how much love and support we're getting,” she said. “Not just from family, but from random people that I've never even met.”

Inspired by the generosity of the Medicine Hat community, Edler said she will be donating any extra money raised back to the Alberta Children’s Hospital they’ve called home the last few weeks.

Hullah said it’s an inspiring request, especially from someone who is going through a major battle in their own life.

“There's a whole network of other families there,” she said. “So, her offering to donate whatever she doesn't use to those families, it's wonderful.”

She added it’s a mindset and an act of kindness that she hopes to pass down to her own children as well.

“Be kind, help people, and really just support your community when people are in need,” she said.

Anyone interested in contributing to the ‘Max the Warrior’ fundraiser can visit the active GoFundMe page.

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