MIRACULOUS MADALAYNA
New life after stem-cell transplant
She’s sassy and feisty. She has changed her parents’ lives, and her story has moved a city.
Nine months after one-yearold Madalayna Ducharme’s lifesaving stem-cell transplant, life is different. But “it’s good,” said her mother, Tamara. “It’s really good.”
A year ago this month, Madalayna, then three months old, was rushed to Windsor Regional Hospital after appearing to suffer a seizure. It was the latest in a long list of unsettling symptoms. She was transferred to hospital in London, and Tamara and her husband Charles were sent home to pack their bags.
“We pretty much handed her life over to a team of specialists and hoped they could keep her alive,” said Tamara. It was just the start. For more than two weeks, doctors conducted test after test. But they couldn’t figure out what was wrong.
Tamara will never forget meeting with the doctor who cared for children in critical condition.
“He sat us down and said, ‘I really don’t know what’s going on. I’ve seen a lot of things, and I can’t tell you what’s going on, and that’s scary.’ ”
Madalayna’s fontanelle, the soft spot in a baby’s skull, was enlarged. She was spitting up. There were spots on her liver. Her blood, ultrasounds and other tests were all abnormal.
Sent home for Christmas with no diagnosis, her parents were just grateful to still have her.
Finally, more than a month later, on Jan. 13, there was a diagnosis: malignant infantile osteopetrosis, a one-in-200,000 genetic disorder that causes bone to thicken and reduces life expectancy dramatically.
Normally, when a child is developing, some bone is continually broken down by cells called osteoclasts and rebuilt by cells called osteoblasts. But with osteopetrosis, the osteoclasts don’t work properly, and the bones grow denser and thicker. The baby’s head becomes larger and heavier, too heavy to hold up. Nerves are compressed, damaging vision and hearing. The space inside the bones, which houses bone marrow, is constricted, and fewer red blood cells can be produced.
Without a stem-cell transplant, most children don’t live past age 10. Tamara and Charles celebrated when Madalayna turned six months old because they didn’t know if she would reach one year.
Searching for a match for a transplant, the Ducharmes took to social media, imploring people ages 17 to 35 to be swabbed and join the stem-cell registry. Hundreds of people attended clinics. More were tested at the Canadian Blood Services. More than 1,000 registered as potential donors.
Then a match was found — Madalayna’s two-year-old brother, Henrik. Tamara and Charles were elated. They were also scared. The transplant may not succeed, doctors at the Hospital for Sick Children in Toronto warned them. The drugs could cause a lot of side effects. Tamara just held Madalayna and told her, “You’re going to beat this.”
On March 17, St. Patrick’s Day, after nine days of chemotherapy to kill Madalayna’s stem cells and make room for Henrik’s, the transplant was performed.
It was Day Zero on the Facebook page Miracle for Madalayna, where Tamara began documenting her daughter’s fight for life. Thousands of people followed it. They celebrated Madalayna’s progress and offered solace during setbacks.
It kept Tamara and Charles going.
“It made me feel all of Windsor was fighting in her corner,” said Tamara.
“It was very powerful. It makes me feel like it’s going to be OK.”
On April 19, Day 33, doctors declared Madalayna’s new stem cells engrafted. They had become established in her bone marrow and were producing new blood cells.
It was a “big high,” Tamara remembered.
On June 26, Madalayna reached Day 100, a milestone for transplant patients when the potential for complications falls significantly.
Tamara was so exhausted she felt nauseous.
But she posted: “I cannot believe how far we have made it. We are blessed.”
And on June 30, Day 105: “We are home. It feels surreal.”
Madalayna was discharged with a tackle box full of medications and supplies.
Today, doctors are hopeful the transplant succeeded. Nine months ago, Madalayna’s body couldn’t produce enough red blood cells or produce them in the right places. Now it does.
She will take her last dose of antibiotics, to help her compromised immune system fend off illness, Christmas weekend. It’s another sign she’s getting there. But when she goes out, a plastic cover over her stroller still protects her from germs. She doesn’t go in crowded places. Charles goes to work — he teaches science at Ecole Secondaire l’Essor in Tecumseh — but other than that, the family doesn’t go out much. If they contract a cold, they could infect Madalayna. They don’t allow many visitors, either. Their families and friends know the protocol. If they’ve had a fever, vomiting or diarrhea in the last 48 hours, they notify Tamara and Charles.
“It’s tough,” said Charles. “We were isolated in Toronto for five months. Then we lived in London. Then we came home and everybody was, ‘Oh, you’re home!’ We were, ‘No, get back!’ ”
Madalayna also remains on fever watch. If she develops a fever, she must go to Windsor Regional Hospital and will then be transferred to London.
There’s also a shunt in her head to relieve pressure from fluid in her brain
She can see, though her vision could be compromised. She tilts her head to focus, and she has tics. She’s supposed to wear glasses, but it’s tricky getting her to keep them on. She can hear; she’s beginning to repeat words. But it’s difficult to test a one-year-old. Her hair is also growing back. After months with a feeding tube, she’s also learning to eat.
What remains is a lot of vigilant monitoring by Tamara and Charles and monthly checkups in London.
But there’s no prognosis. No one with the disorder has lived past age 30, even with a transplant. Some live into their 20s. Some have died months after a transplant. Every case is unique. Tamara and Charles focus on the positive stories.
“We need to be hopeful,” Tamara said.
“The idea is just to keep monitoring to make sure everything stays the way it should be,” said Charles, who follows a Facebook group of 90 parents of survivors from around the world.
“We’re hopefully expecting a somewhat normal lifestyle — with extra doctor visits,” he said. The next milestone is one year. Madalayna, who is part of studies on treating the disorder, scoots along the floor on her bum, pushing herself with one hand and clutching things with the other. She can pull herself up onto her feet. She babbles. She’s silly and curious and strong-willed.
“We’re pretty proud of her,” Tamara said.
The year has taken a toll. The worry, the lonely months away from home, endless appointments and news that other families have lost their children.
Tamara is beat. She and Charles don’t have much time for themselves. Henrik, now three, doesn’t always get the attention he used to.
But Tamara and Charles don’t complain. They’re lucky, they’ve learned.
People tell them they don’t think they could go through what the Ducharmes have gone through. But this year has made Tamara and Charles stronger.
“When you find your back against the wall, you will be,” Tamara said.
And they learned, as clichéd as it sounds, that life is precious.
“You don’t know what’s going to be handed to you,” said Tamara. “Sometimes you have to live day by day, sometimes hour by hour.”
So they celebrate small joys. Tamara uses the word grateful a lot.
“We take the kids out for a walk and they’re both smiling and we just bask in it,” she said.
Both kids are too young to understand what Henrik did for his sister. Still, it’s like there’s a bond between them, Tamara said.
“These two are going to be pretty inseparable,” she said.
The Ducharmes also learned that many people care, a lot. Everywhere they go, people who follow Miracle for Madalayna ask them, “Is that Madalayna?”
“If we were doing this alone,” said Tamara, “I don’t know where we’d be.”