Family struggles while son recovers from virus

When Marlaina Resendes feels down she looks at her 3 1/2-year-old son, Zion, and marvels at his strength and will as he tries to recover from a disease that, one year ago, almost killed him.

“It’s his spirit,” says the Bathurst Quay mother unequivocally when asked how she deals with her son’s ordeal. He’s battling enterovirus D68 which he contracted last September when the family vacationed on a little island off Cuba.

“I can’t even express how many times I thought I was just going to give up. It killed me to see him go through this—and then he would smile at me. I would look at him and think who am I to even want to give up,” Resendes said in an interview.

With stubborn determination Zion is taking charge of his life even though the virus has left him with a non-functioning right arm, right lung and diaphragm. Gradually, with much effort, he’s becoming more like his former self, said his mom.

He put a scare into his family last September on the small island of Cayo Coco after he showed signs of a fever and then woke up from a nap gurgling and drooling saliva.

“When I picked him up every limb literally just dropped,” said Resendes. “He couldn’t move anything. He was paralyzed head to toe, internally and externally.”

Zion was rushed to an island hospital and four days later—when it was safe for him to fly—he and his mom were jetted back to Toronto by Sick Kids Hospital. By then, both his lungs had collapsed and his heart doubled in size. Sick Kids put him into an induced four-day coma to prevent him from suffering a heart attack.

Resendes said her son would not have survived a heart attack. To say she was scared “is an understatement,” she said. “I didn’t understand what was happening. I didn’t understand what was wrong with him.”

Doctors conducted MRIs on Zion and found he had lesions on the back of his brain. His entire spine was infected with the virus. All his blood was replaced and white blood cells were added to help fight the disease. Doctors tell Resendes that Zion’s recovery will be “a very slow process” and he likely won’t regain use of his right arm.

After a 6-month stay in hospital—he was discharged last February—and being hooked up to breathing and feeding tubes, Zion is back home. He attends Holland Bloorview Kids Rehabilitation Hospital in East York with occupational, speech and acqua therapists.

“He’s had to learn some of his letters. Because he has only one lung to breathe they’ve worked on breathing exercises where he can actually say a full sentence now. Sometimes you’ll still see him go blue around his lips because he’ll forget to take a deep inhale,” said Resendes. “His left lung works except it’s slow to fill.”

Something most children like to do is ride a bike, and Zion is no different. With a little fundraising his family bought him a specially-made bike with thick training wheels. He wears a helmet when riding—as he does when walking.

“He wanted to ride this bike so bad that he pushed himself to do it,” said his mom. He puts his right hand into a glove attached to the handlebar and twists his body to pull and make turns.
“Everything in life that he wants to do and did before he still pushes himself to do it,” said his mom. He’s relearning to climb the slide ladder at the Harbourfront Community Centre (HCC). He uses his right knee to lift his right arm to the crossbar and grab on with his fingers that, fortunately, still work.

“He’s adapted so well,” said Resendes. “He’s lost his arm, he’s lost his lung and diaphragm but he doesn’t act like it. He lives life to exactly how he did.”

Resendes said the Bathurst Quay community and friends and family have rallied to help her, especially since she’s had to take a leave of absence from her Toronto General Hospital housekeeping job.

HCC has given her gift cards to get groceries, her co-op landlord has been understanding if the rent is late, and neighbours have made her meals when she’s been in the hospital with Zion and have offered to take in her daughter overnight when Resendes has stayed at the hospital.

As for Zion, the family has had to put grip bars in the bathroom. Resendes’ uncle has made stairs so Zion can climb into bed with her (doctors have advised he not sleep alone with his lung condition). He sometimes needs a wheelchair if his legs get weak and Resendes had to buy a vehicle to move Zion around. “He’s got medical appointments constantly all over the place,” she said.

Because of his moribund diaphragm Zion can’t cough up phlegm and has to use a $5,000 cough-assist device which fortunately Resendes was able to get coverage for.

His condition requires him to wear diapers while sleeping, and a specially-made curved spoon allows him to get food to his mouth with his weakened left arm.

Doctors suggest Resendes buy Zion an iPad because he has difficulty writing with his left hand and holding a pencil. Resendes has had to buy a neck brace and a helmet for her son. She also buys him drink supplements by the case. They give Zion the calories he needs to regain the weight his illness caused him to lose.

Resendes is making a picture book of Zion’s progress that she’ll give to him when he’s older. “From the first day he got sick I’ve taken pictures all the way through. All his procedures, when they sedated him, when they took the lines out of his neck, everything. I call it The Hero In Me.”

“I want him to understand what he went through, how strong he has fought,” she said.

A crowdfunding website has been set up to help Resendes with Zion’s expenses.

Posted On: October 01, 2015

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