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Support Association Inc.

Increasing the understanding of Neutropenia by providing information and support for caregivers, patients and their families.

Blood brothers

One man's selfless donation gave another man life!

For days, he had thought about what he was going to say, obsessed over it, really. In his mind, it had to be perfect. But in the end, Winnipegger Jamie Benzelock was almost speechless as he faced, for the first time, the kind-hearted stranger from half a world away who had saved his life.

A big, strong embrace, one that seemed to last forever, conveyed everything.

 Jamie Benzelock waves with open armes to his stem cell donor, Marco Kiunka, for the first time at the airport in Winnipeg on Thursday.

Jamie Benzelock waves with open armes to his stem cell donor, Marco Kiunka, for the first time at the airport in Winnipeg on Thursday.

 

"How do you say thank you to someone like this? Thank you doesn't seem to do it justice," a teary-eyed Benzelock said Thursday morning after the emotional scene at the Winnipeg airport, just steps away, fittingly, from the "hug rug."

Benzelock, 42, had finally met Marco Kiunka, the German man who, in 2014, was found to be his stem cell match. His generous donation cured Benzelock's severe congenital neutropenia, which he'd been diagnosed with as an infant in 1976.

"It's a blessing. It's a gift. And it's one I can never repay," said Benzelock. "This is a new lease, a second chance."

Kiunka, 48, made his first visit to Canada this week, arriving in Winnipeg Tuesday, along with his wife, Nicole, and son, Noah. They were expecting to meet Benzelock Wednesday evening, but his flight from Washington D.C., where he attends college, was delayed until Thursday.

Jim Benzelock (left), Marco Kiunka, Nicole Kiunka, and Noah Kiunka wait for Jamie Benzelock to arrive the airport. (MIKAELA MACKENZIE / WINNIPEG FREE PRESS)

 Jim Benzelock (left), Marco Kiunka, Nicole Kiunka, and Noah Kiunka wait for Jamie Benzelock to arrive the airport. (MIKAELA MACKENZIE / WINNIPEG FREE PRESS)

Stem cell donor Marco Kiunka with his recipient's family (MIKAELA MACKENZIE / WINNIPEG FREE PRESS)

Stem cell donor Marco Kiunka with his recipient's family (MIKAELA MACKENZIE / WINNIPEG FREE PRESS)

 

What's a few more hours when it had already been four years?

"I was so nervous and scared," Kiunka told the Free Press of their long-awaited meeting with the man he refers to as his "genetic twin."

"It's more than friends," he said.

People with neutropenia, also known as Kostmann's syndrome, have an abnormally low level of neutrophils, a common type of white blood cell that fights bacterial infections. So much of Benzelock's life was spent wrapped in a figurative bubble, along with countless hospital and doctor visits for a raft of tests.

He developed vasculitis, an inflammation of blood vessels that put his organs at risk. Side-effects include leukemia and myelodysplastic syndrome, a group of cancers in which blood cells in the bone marrow do not mature and therefore do not become healthy blood cells. He constantly had painful canker sores in his mouth, sometimes as many as nine at a time, along with boils and blisters and the constant threat of bleeding.

It was a living nightmare that he was forced to endure for nearly four decades. Then, developments in medical science opened the door to stem cell donation.

In early 2014, Benzelock got the call that a match had been found. He knew nothing about the donor, not even the gender or location. He underwent a lengthy, month-long hospitalization that spring in which chemotherapy was done to "wipe my whole system clean."

 

Jamie Benzelock on donation day.

 Jamie Benzelock on donation day.

 

Then the bag of blood — which he jokingly calls it the "good German blood" — arrived. He recalls noticing how small it was. A small bag that held a huge opportunity.

A few expected infections and reactions followed, but his body accepted the magical gift, and suddenly, the many obstacles he had faced were gone.

He had no idea who to thank.

Donor regulations require that all parties wait two years until they can learn each other's identity. So the clock ticked down, and in the spring of 2016, Benzelock got a call from CancerCare Manitoba.

He jumped at the chance to receive the information, just as Kiunka had done.

"I wanted to know him, to say hello," Kiunka said Thursday. He had initially been told the match was a middle-aged man in Canada, but was given no other details. Now he can't get enough information.

"I'm proud of him, that he's gotten healthy. Not everybody gets healthy. So I'm very proud," said Kiunka.

Benzelock and Kiunka first chatted by email, then by telephone. Benzelock even got him to set up a Facebook account to make it easier. They learned about each other, their families, and cherished the bond between them.

Then they made plans to meet. At the airport Thursday, Benzelock was joined by his fiancée and stepson.

Benzelock has less than two years of studies left at the University of the District of Columbia, where he's completing his elementary education degree. Kiunka, who works in engineering, has already helped him with one big assignment, a project meant to educate others about the merits of stem cell donation. Kiunka sent a video confessional for Benzelock to include.

"I was tearing up. I had classmates that were crying. They were like, you'd never know you were that sick. But I don't broadcast it," said Benzelock.

His parents, Jim and Janice, spent more than 25 years learning everything they could about neutropenia, raising money and public awareness. They were both on hand Thursday to see their son meet his donor.

"It's just incredible that someone from around the world..." Jim Benzelock said, his voice cracking. "He's healthy as a horse now."

Kiunka and his entire family had registered as potential stem cell donors following a public plea in Germany for an infant who needed a transplant. His help wasn't required in that case, but he was thrilled when his number was eventually called.

"For me, it was an easy thing to be a donor. Everyone can be one. It's just a few hours in the clinic and then you go home. You're finished," Kiunka said of the painless procedure.

Turns out he's set a great example within his own family.

"I'm very proud of him. It's not so much work, and if you can help some people then why not?" said his son, Noah.

They'll enjoy these next few days together in Winnipeg, and are already talking about Benzelock going to Germany once he finishes his degree.

"I had the dream to become a teacher. This was one of those things that had to be put on hold. But now that the process is complete...if it wasn't for Marco, none of this would have happened. I'm probably not here," said Benzelock.

"You're so blessed and thankful for the years that you get. And then when something like this amazing gift that a stranger gives to you, it reverberates throughout your entire life, your family and friends. The life you've built up over the years. I've got friends who want to line up around the block to give him hugs."

They'll have to get in line, behind him.

By: Mike McIntyre | 08/9/2018 
Winnipeg FreePress.

Toronto Sick Kids charity event

Update !!!

We have received a Cheque for a Total of $300.00, and a list of donors for this event. Since the funds were received by us in 2019, all receipts for this event will be dated for the calendar year of 2019.

Thank-you for your generous donation in support of this charity event. Funds raised from this event will go directly to The Toronto Sick Kids Hospital for Day Parking Passes.

 

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In March I had the pleasure of meeting a very kind and energetic young man. He and Dom, both 8 years old, hit it off right away. A few weeks later the boys father had told me that his son suffered from a condition called Severe Congenital Neutropenia.

Neutropenia is a condition that affects Neutrophils, a type of white blood cell that aids in fighting off infection.

Approximately 40 percent of affected people have decreased bone density (osteopenia) and may develop osteoporosis.

Approximately 20 percent of people with Severe Congenital Neutropenia, specifically Kostmann's Disease, or Syndrome, (not cyclic neutropenia, which also can be congenital) develop AML, a type of leukemia that can develop anytime during their lifetime. Often, a bone marrow, or stem cell transplant can be life saving.

This July 21 and 22 I will be holding a charity event to raise money aiding parents with kids in hospital. Specifically, at Toronto Sick Kids Hospital with various types and causes of Neutropenia receiving treatment and care by providing the Child Life Dept. with the funds needed for a parking pass (s) to share with the families.

Each parking pass per month costs $300.00. A total of $3,600.00 a year.

This event will consist of me canoeing an 80km span of the Grand River beginning in West Montrose, Ontario and ending in Paris, Ontario.

For money to be sent to support this charitable event, it must first go to the Neutropenia Support Association Inc. in Winnipeg.

P.O. Box 243-971 Corydon Ave. Winnipeg, Manitoba, R3M 3S7

1-800-6-NEUTRO

www.Neutropenia.ca

Once they receive the donations they will provide you with a tax deductible receipt.

They will send the TOTAL donations raised by this charitable event to the Child Life Department at Toronto Sick Kids. NSAI has provided parking passes in the past.

The Neutropenia Support Association Inc. is a small, volunteer based charity since 1989.  Canadian Charity # 0848093-11.

Because of this, they do not accept online donations. Below I will attach a pledge form as well as the website and contact information for the charity. Please do not mail cash. Cheques are much safer in the mail. If you wish to donate cash, I will accept cash donations with donation forms and will send all cash donations in the form of a cheque to them after the event. They are aware of this event and will gladly answer any questions you may have about the charity. You can also call or DM me any questions and I'd be happy to go into further detail with you.

Thank you for your time :)

Donation form
https://www.neutropenia.ca/donate

Contact Info
https://www.neutropenia.ca/contact

Neutropenia Info
https://ghr.nlm.nih.gov/condition/severe-congenital-neutropenia"