Quebec woman donates 'beautiful gift' -- a kidney to a 12-year-old girl she'd never met

MONTREAL -

Until you know what binds them, it’s hard to understand the intensity of the relationship that’s developed between two Quebecers with a 40-year age difference, who up until six months ago, were strangers.

Today they are inextricably linked because of one selfless act: 52-year-old Maryse Boivin from Sherbrooke donated a kidney to 12-year-old Valentina Quintero from Quebec City.

“It’s special to know she has a part of me,” said Boivin, who is a mother herself. “It’s a connection, a golden thread that ties us together for all our lives.”

During her first year of life, Valentina was diagnosed with a rare genetic disease called cystinosis.

Most patients don’t survive beyond the age of 30. Specialists in Montreal are following about ten children now who have the illness.

“It's a disease of a very specific part of the kidney and it's a very difficult disease to treat,” said Dr. Indra Gupta, division director of nephrology at the Montreal Children’s Hospital.

The medication, one of a dozen Valentina has been prescribed, “is very hard to take and causes a lot of nausea and stomach upset,” said Gupta.

And, it only prolongs kidney functioning but does not prevent kidney failure and the need for a kidney transplant down the road.

So when Boivin came into the family’s life with an offer so generous they couldn’t believe their good fortune, Valentina was spared dialysis and a wait for a new kidney.

That gift “is exceptional, and most of our patients don't have that opportunity,” the pediatric nephrologist said.

At a first reunion Monday at the Montreal Children’s Hospital where Valentina goes monthly for intravenous treatment, Boivin leaned over the sleepy girl and told her how happy she was to see her.

“You know what we call you?” she asked, as she introduced Valentina to her partner of 28 years, who had travelled with her from Sherbrooke.

“We call you “'child of courage.' You are very courageous,” she said.

Those tender words of praise come from someone who is also being called courageous for donating a kidney to a stranger.

It’s something Boivin dismisses as “nothing, compared to the strength Valentina had living 12 years with a disease.”

She sees her altruism as something she’s just always wanted to do and she downplayed any effort on her part.

“It was very, very positive. We want hope and to help a family...and now this family can restart a life instead of having a life of waiting."

"People wait for a deceased donor, but why shouldn’t it be a living donor?” she said.

Valentina’s father Edwin Quintero uses a far less clinical phrase to describe Boivin and her life-saving decision.

"We felt privileged," he said. His family here and their extended family in Colombia, "call her an angel that fell from the sky."

SAVING VALENTINA

The symptoms of cystinosis affected Valentina early in life.

Before the age of one, she began urinating excessively, so much so that she became dehydrated - the result of a build-up in the kidney of the amino acid cysteine.

“The kidney accumulates the cysteine crystals and this is what leads to the prolonged water deficit and the loss of vital electrolytes into the urine,” said Gupta.

The loss of electrolytes like calcium cause deficiencies that compromised Valentina’s development.

“It's an enormous burden for the family. The medications they have to give, the fluids, the formula - as a child Valentina was actually fed through a tube in her stomach to try to promote her growth,” the specialist said.

Once families get the diagnosis, they usually receive genetic counselling because the disease is so challenging to treat and the long-term outcome, often a significantly shortened life span - is so significant.

A kidney transplant does not cure the disease but it vastly improves the child's life.

"I would say that a good kidney outcome would be a good 15 to 20 years and maybe longer," Gupta explained.

ENTER THE 'ANGEL'

In 2017, Valentina’s health deteriorated and doctors told her family she would need a new kidney - and soon.

The family searched for a relative who could donate a kidney but many members of the Quintero family live in Colombia and couldn’t help.

So Quintero turned to social media, posting a story about his then eight-year-old daughter’s plight.

Boivin saw the post and contacted the family with her unusual proposal.

“It was incredible, it came at just the right time,” Quintero said. “We were very lucky she came into our lives."

“Yes, people in my entourage were surprised when they heard,” Boivin said of her offer to donate a kidney to a young girl, “but everyone was behind me, my family and my partner.”

The medical team at the Montreal Children’s Hospital was overjoyed.

“Totally grateful. We knew what an incredible gift this is,” Gupta said since with “most patients as their kidney declines, there's no donor available.”

“I cried. I cried. I literally cried. You get attached to these families,” said Marta Rodriguez, a nephrology nurse at the Children’s who has cared for Valentina all through COVID-19.

“Just to know that, oh my God, this person is giving a part of herself to another human being is just a miracle. It's a real modern-day miracle,” she said.

ANOTHER TWIST

Just as Boivin entered the picture, however, Valentina rallied. Her health stabilized, and so the care team decided it would be best to postpone the transplant, a complex procedure in itself--until there were no other options.

This raised numerous concerns. Would Boivin still be able to donate a kidney sometime in the undetermined future? Would she still be willing?

When Valentina’s health condition declined again during the pandemic, those questions were answered.

Boivin was finally asked if she would make it official, travel to Montreal and go to the Royal Victoria Hospital for a battery of psychological and medical tests to make sure there were no ethical conflicts or physical issues if her kidney were to be removed.

The team that takes care of the living kidney donor program at the Royal Victoria Hospital determined that the 52-year-old woman would be able to live a normal life and she would not have any deficiencies or health concerns.

In mid-May 2021, Boivin’s kidney was removed at the Royal Vic and transplanted into Valentina by a transplant team at the Montreal Children’s.

Although she was told to expect a six-week recovery, within one week, Boivin said she was back to walking eight kilometres a day and by the two-week mark, had returned to work.

Valentina had a more difficult time.

“The first six months after transplant are a rocky up-and-down course,” Gupta said, but her condition has improved and it’s hoped she’ll transition from virtual lessons to in-class school in December.

Boivin and the Quintero family texted one another or spoke every day after the surgeries.

The young patient called her as well but it was five long weeks before the donor and recipient could meet for the first time.

“It was definitely a magical moment that will always stay with me,” said Boivin.

“She’s still very young,” said Quintero of his daughter, but she always asked me before who was the person who will give her their kidney and I say. 'It’s Madame Boivin, a person who contacted us.' She said it’s a good present. Yes, it’s a beautiful present,” he said.