‘Max the Warrior’ back at home after being hospitalized due to rare disease

Thankfully, Edler and little Max didn’t have to be in Calgary alone.

“Max had his six-year-old brother (Mason) with him. It’s ironic because while Max is an introvert, his brother is quite the opposite,” she laughed. “He’s loud and and always full of laughter. Mason really helped both Max and myself get through the tough times.”

Edler explained that as a mother, this entire process has been absolutely gut-wrenching.

“When something like this happens that you have no control over, it’s extremely difficult to sit and watch your child suffering. I’m really lucky that both of my children are extremely happy and resilient.”

That resiliency allowed Max to settle back into his home nicely.

“I thought it would take him a little bit to get comfortable and get back into our regular routine. The second we walked in the door, his face changed and he just went back to being my happy, eight-year-old little boy.”

In addition to being back home, Max is also back at school full-time.

“When he went back, he actually had to wear a medical mask because he has a very low immune system. He’s definitely a little overwhelmed with the love and support he’s received at school. Overall, I’d say he’s doing quite well though.”

Herald School has also been very accommodating to Max’s situation.

“The school is allowing him to eat lunch wherever he needs. If he’s not feeling comfortable in the cafeteria where there’s a ton of kids, he can find a quiet place to be. Staff has also allowed him to take a step out of the classroom and take a breather any time he needs. They’re really not pushing him education-wise and just want to ease him back into the routine.”

In terms of his health, Connie said things are slowly starting to look up.

“He’s on a salt-free diet and he doesn’t hesitate to let absolutely everybody know that he’s not allowed to have salt. He still struggles with the swelling in his face and his feet and has blood-pressure issues as well.”

Max now takes nine-different types of medication at home. In addition to that, the Medicine Hat Regional Hospital (MHRH) has also been set up to provide Max with his Eculizumab treatment, which requires him to take it intravenously.

“Our first treatment here was on December 27th. The staff were great and they made the process very simple for us, which was much appreciated after what we’ve been through.”

Before coming back from the Children’s Hospital, Connie had to be trained on Max’s dialysis machine. She said that will no longer be an issue.

“Three days before we were discharged, doctors made the decision that he no longer needed the dialysis machine and he actually went in and had surgery to remove the dialysis tube. The only treatment he’s receiving is the medications that he does at home twice a day and then his infusions every two weeks at the hospital.”

Edler said their next trip to Calgary will be on January 23rd when they are scheduled to meet with kidney specialists.

“His body has a harmful amount of antibodies in his system and the only way to get rid of that is a process called ‘plasmapheresis’. That process would pull the blood out, filter out the plasma and then doctors would put the blood back into his body.”

This process would help reduce the antibodies in little Max’s body. This treatment would take anywhere from 1-3 hours for 7 days in a row and then once a week until they get the antibody numbers back to normal levels.

“If all goes well with the plasmapheresis, the hope is that eventually he would come off the Eculizumab and he wouldn’t need the life-time doses as they had originally thought.”

A single dose of Eculizumab costs upwards of $10,000.

Alberta Health has paid for the first six-months of his medication, which means Edler will have to find private coverage if Max needs the medication for the rest of his life.

“At this point, all of that has been put on hold. Once he does this plasmapheresis, we’re hoping he won’t need the Eculizumab. If he doesn’t need the drug, that’s one battle we won’t have to fight.”

Edler described this entire process as one big fight. One that she is thankful that she hasn’t had to deal with alone.

In one months time, the ‘Max the Warrior’ GoFundMe page raised $10,850 thanks to the generosity of 147 contributors.

“That money will definitely help cover a lot of the medical expenses as health coverage only goes so far. We’re going to be taking many trips back and forth to Calgary while we figure out this plasmapheresis and what that is going to look like.”

Edler said this geneoristy has allowed her to focus solely on her son.

“It’s helping me to not have to stress about income because at this point and time, I can’t be at work full-time. It’s nice to know I have time to spend with my son and be there when he needs me.”

Edler said the overwhelming support from the community of Medicine Hat absolutely took her breath away.

“We would love to thank each and every person individually, but that’s not possible. I just want everyone to know from those who donated, to those who sent us messages of well-wishes, every little bit meant the world to us.”

by Taylor Chartrand

‘Max the Warrior’ back at home after being hospitalized due to rare disease

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