Yarmouth family to meet bone marrow donor from Germany who saved boy's life

By Tina Comeau

THE VANGUARD

NovaNewsNow.com

Thank you.

Two words. Eight letters.

So much gratitude behind them, yet by themselves these words seems inadequate.

So five-year-old Bryden Hutt is going the extra mile. Actually, thousands of extra miles.

This week the grade primary Meadowfields student is going to Disneyworld with his family. The family leaves on Wednesday, Nov. 12. The trip is a wish granted through the Children’s Wish Foundation. It was Bryden’s wish to make the trip with his mom and his dad. And also to make the trip with Felix.

Who’s Felix?

Felix Kruse lives in Germany, and when Bryden was five months old, he donated bone marrow to help save the little boy’s life.

In the years since, Kruse and the Hutts have exchanged phone calls, letters and photographs, but they’ve never met. After all, given the distance that separates them a meeting seemed like just wishful thinking.

And thanks to Bryden, it is.

Bryden Hutt was a full-term, seemingly healthy baby.

But four weeks after his birth in 2003, things didn’t seem right to his parents Wendy and Jason. He had developed severe diaper rash. He was crying a lot. He was vomiting a lot. His face looked like it had burns on it. Over the next couple of weeks the parents brought him to the hospital many times.

Wendy Hutt was told to relax. You’re a new mother. You’re just being paranoid. It’s probably nothing. Maybe he’s allergic to milk. Maybe it’s a mineral deficiency.

But after an appointment with their pediatrician they were told to go to Halifax. Immediately.

At the IWK Health Centre the parents were told there were a few possibilities. And they were warned to prepare for the worse case scenario – leukemia.

At six weeks old Bryden was admitted to the intensive care unit of the IWK, where he would stay for the next three months. Eleven days into his stay his parents were told he had Ommen’s Syndrome. “They warned us not to go on the Internet because that’s the first thing people do when they hear something strange, they go on the Internet to see what it means,” says Bryden’s mother. “But that’s exactly what we did. And on the Internet, the only research showing was very old and basically it was stating that a child left untreated barely makes it to their first birthday.”

In other words, for the Hutts, their world had come to an end.

Bubble boy disease.

In layman’s terms, that’s often how people refer to Ommen’s Syndrome. “Basically people with this are born with no functioning immune system. Left untreated his organs would shut down,” explains Wendy Hutt.

The syndrome is very rare. Since 1969, when it was first diagnosed, there have been roughly 350 reported cases. Hutt says 70 to 80 of these people are still alive. Many spend a lot of time in isolation because in a world filled with germs and illness, it’s not safe to be around other people, or to be in social settings.

The good news is that like any disease or syndrome, each year more is known about Ommen’s Syndrome and the protocol changes. But when asked what the future holds for Bryden, it’s a difficult question for his parents to answer. “All I know is the oldest living ommen’s is somewhere between and 18 and 20 years old right now,” says his mother. “We’ve had a lot of people ask us, what is the prognosis and we don’t know, and it’s almost a blessing that way. We’d rather treat each day individually, instead of looking for that day.”

It’s taken the family a lot of days, weeks, months and years to get from the day Bryden was diagnosed to where he is now. One of the biggest hurdles was the bone marrow transplant. “They did a search. They found a donor 11 days after the search started. We went up to Toronto and we were there for a year,” says Wendy Hutt.

The transplant happened on May 29, 2003. It was preceded with high-dose chemotherapy and other medical procedures. It was followed up with more medical intervention. Bone marrow is a person’s immune system. And so after the transplant the doctors and Bryden’s family waited for his white blood cell and platelet counts to go up and they had to keep a watchful eye for rejection. The road to recovery wasn’t smooth and aside from the fact his counts were slow to increase, the infant developed other problems, particularly with his bowel. “We almost lost him,” whispers his mother.

During his lengthy hospital stay, Bryden’s parents were restricted from touching him skin to skin for nine months. They had to wear caps, gloves, masks and booties. “At the time it felt like it was never going to end,” Bryden’s mother says. “We were there for a year and we just wanted to go home. We’d see kids come and go and have their treatment and deal with it so much better than he did.”

Bryden’s father Jason, meanwhile, was making trips back and forth between Toronto and Yarmouth. The fisherman had to keep earning a living so the family would have a life to return to.

In Nova Scotia there had been fundraisers to help the family cope. Money was raised in the Chester/Lunenburg area where Jason is from, in Shelburne when Wendy comes from, and in Yarmouth where the family lives. “I know it sounds lame, but they say it takes a village. In this case it took three,” says Wendy Hutt.

Actually, it took four.

A continent away Felix Kruse’s name was already on the bone marrow registry in Germany. He had placed his name on the registry during a campaign by the Red Cross 10 years ago. “A boy from our town (Neuss) had leukemia, I think his name was Marco,” Kruse tells the Vanguard. “My family went to the blood test and so I went too. I did not think to much of it.”

But what a difference that small act made years later. Kruse, who was 24 at the time, was surprised his bone marrow was a match to someone in Canada. “For me it was just very interesting and exciting,” he says. “I did not think, should I do it or not? I was happy that I could do it.”

Two years after the transplant, the Hutt’s learned the identity of Bryden’s bone marrow donor.

In the years that followed Bryden’s transplant, the youngster wasn’t out of the woods and his early years in life were spent in isolation. A year after the transplant he experienced rejection that affected his legs. The skin on his legs was fusing to his muscles and not allowing movement, which required surgery. He now has splints on his lower legs and feet and he uses crutches and a walker at times.

He’s also small for his age.

But if there’s a word his mother uses to describe Bryden, it’s determined.

He’s determined to be a little boy.

He still receives a weekly immune suppression needle and his parents have to be very careful that he not come in contact with things like the chicken pox, which would surely land him in the hospital.

But more acutely aware of his surroundings – given the years he spent with no one other than his family – he’s enjoying school. His mother says he’s having a blast and his school principal says he has so much enthusiasm it’s great.

Last month Bryden went to his very first birthday party with children his own age.

And to top things off, on Nov. 12 he was leaving for Florida on his wish trip.

It was hard for Wendy Hutt to stop from crying when she heard her son’s wish. It was hard for the representative from the Children’s Wish Foundation to hold back her tears too. “He said I want to meet Lightning McQueen and Mater (from the movie Cars) in Disneyworld,” recalls Hutt. “The woman from the Children’s Wish Foundation looked at him and said, ‘Who would you like to bring with you?’ “He said mommy and daddy and she said, ‘Is there anyone else?’ He thought about it for awhile and then he said ‘Felix….he’s my bone marrow donor, he saved my life when I was a baby.’”

While deeply moved by her son’s wish, Bryden’s mother figured the chances of that happening were slim to none. Whispering so her son wouldn’t hear her, she told the wish foundation representative not to worry, she’d explain to him why this couldn’t happen.

But wait, not so fast, they told her.

And within a day or so they told her if Bryden wanted to bring Felix on his wish trip, they were going to make sure it happened. “I was very surprised when I found out that it was Bryden himself who wanted to invite me on his trip to Disneyworld,” says Kruse. “I am very excited to meet the whole family.”

And there will be a lot of family to meet, as other members of Bryden’s family will be making the trip. Meanwhile for his parents, they’re looking forward to a break from the hospital, the doctors and the worries. “It will be very nice to get away from all the chaos of the hospital for awhile,” says Bryden’s father. “This is a good way to forget everything,” adds his mother. “To leave everything behind for a full week.”

And to get to do it with Bryden’s bone marrow donor is more than any of them could have wished for.