Local boy battling rare disease catches a break

The doctor stated he hadn’t even applied for the funding for an extra six-months, just that he was called and told the funding had already been pre-approved.

“It just gives me some extra breathing room to know that I now have six-months to try and figure out some sort of medical coverage.”

After the six-months of coverage, Edler said she will have to find private coverage, which could be a bit of a process.

“I think our first step would be applying to Blue-Cross to see if they would cover it. If they do, great. If not, the coordinator from the medication company will actually help me find different companies within Canada that will help me through this process.”

The medication that little Max needs is known as Eculizumab or Soliris.

Alberta considers Soliris for patients with atypical Hemolytic Uremic Syndrome on a case-by-case through the Short Term Exceptional Drug Therapy Program.

One of the side effects of the medication is that it brings down the complement system and that’s also the same system that’s responsible for fighting the meningococcal virus.

“His complements system is working in overdrive. It’s actually doing more damage to his body by working harder than its supposed to. This medication will slow down and block his complement system from working. It will essentially stop the disease from progressing within his body and allows him time to heal.”

In theory, once this medication has been in his system long-enough, Max should be able to come off dialysis and his kidneys should start working again.

“The doctors will be taking three tissue samples from his kidneys and we’ll hopefully get those results in seven to ten days. That will tell us if his kidneys will be able to bounce back or not. At this point it’s really 50/50.”

That test will determine whether or not Max will need a kidney transplant in the future.

“With that being said, he’s going to be on antibiotics for the rest of his life, as long as he’s on his medication. Every five months he has to get boosters for five different strains of the meningococcal virus just to keep him safe.”

Along with that, the treatment for receiving the Soliris medication is slightly more complicated than receiving a shot.

“He has an IV bag and they do it intravenously. He has to sit next to the IV station and they do an infusion drip. It lasts anywhere from 1-2 hours and it just depends on how his body tolerates it. He needs to be supervised every time he has it because he can have a negative reaction to the medication.”

Edler is hopeful the Medicine Hat Regional Hospital (MHRH) will be able to administer the medication for Max as early as January.

“From there they will continue to do blood-work to make sure things are going well. The outpatients clinic at the MHRH can do the infusions there.”

After being administered his first two doses, Edler said Max’s body is responding well to the new medication.

“Within his appearance all of his swelling came down. They were able to pull all the extra fluid out of his body with the dialysis. Now, his creatine levels, hemoglobin, red blood cell counts and his platelets are all going up. Those are all big indications that his medication is working.”

The unfortunate part of this story is that a single dose of this drug costs upwards of $10,000.

Thankfully, Max and Connie have not had to battle through this situation alone.

The community of Medicine Hat has rallied behind Max, raising $9,925 through his gofundme page ‘Max the Warrior‘.

Additionally, Max’s classmates over at Herald School have also chipped in to support their friend. Over their three day fundraiser, the school was able to raise $5,683.

“There’s no better gift that a parent can receive than getting the complete and utter support from the school and community. I was born in Medicine Hat and I couldn’t be more proud of the place that I call home.”

Edler said she is not the only one overwhelmed by the support from Hatters.

“I showed Max the interview that CHAT News had done with his principal and he burst into tears saying ‘I didn’t know so many people cared.’ He’s just so thankful to have his community rallying behind him during this battle.”

Now, the only thing that is really keeping Max in the hospital is his dialysis.

“They’ve now reduced his dialysis from 21 hours a day to 9. They’re training me on how to use the machine so when the time comes and he’s ready to go home, I can maintain dialysis from home.”

Edler said she has spent several hours figuring out how to operate the dialysis machine.

“I will continue my training for most of Thursday and Friday, just so I can feel comfortable operating the machine. In between sessions, I’ll be using his dialysis machine in his hospital room with the nurses guiding me around how to use it properly.”

As you could imagine, this entire process has been quite taxing on both Edler and Max. She said they’re both ready to be back in Medicine Hat.

“We want to have some sense of normal. Christmas is coming and every kid wants to be home for the holidays. It sounds like the doctors are quite hopeful that he could be home for Christmas. Being home doesn’t mean that he’s going to be back to a healthy kid, but at least he’ll get to sleep in his own bed where he’s comfortable.”

by Taylor Chartrand

Local boy battling rare disease catches a break

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