A little girl, barely a few months old, suffering from a rare disease, is already facing the biggest battle of her life as she must undergo difficult treatment that could save her but also render her infertile.
“It’s a situation you never want to experience as a parent, it’s scary. “It makes you feel completely helpless,” sighs Kevin Nichols, little Jade’s father, who was contacted by Le Journal from Rimouski.
Almost two and a half months after her birth, blood tests revealed an abnormality in the little girl. A few weeks later, further tests revealed that she had primary hemophagocytic lymphohistiocytosis (HLH).
Kevin Nichols and his daughter Jade during one of their many hospital visits. Provided by Kevin Nichols
This potentially fatal disease, which causes immune deficiency, is characterized by the development of extreme inflammation. The child’s body attacks its own white blood cells, red blood cells and/or platelets.
According to a study published in 2021 by the University of Cambridge in the United Kingdom, it is a very rare disease, affecting 1.2 in 1,000,000 people.
“It’s not easy, we wonder what we did to deserve this,” laments Mr. Kevin Nichols, while his wife has not left their daughter’s bedside in Montreal for more than two months.
Marie-Philippe Dufour has spent the last two months at her daughter Jade’s bedside in Montreal and Quebec. Provided by Kevin Nichols
To have the choice
Treatment for the disease consists of eight weeks of very effective chemotherapy to “destroy” the child’s immune system before a stem cell transplant is performed.
Although these procedures have been going well so far, they also come with a price. Little Jade, now 4 months old, is in danger of remaining infertile forever.
“It was very painful to hear, it saw us through our legs. Here we agreed to put our ego aside and ask for help,” says the father, who wants to offer his daughter a normal future.
Little Jade suffers from primary hemophagocytic lymphohistiocytosis (HLH), a life-threatening disease that causes immune deficiency and is characterized by the development of extreme inflammation. Provided by Kevin Nichols
Relatives of the couple have launched a crowdfunding campaign to give the child the opportunity to start a family if he so desires. An initiative that snowballed and raised more than $30,000 within a few weeks.
“We were so touched to see people’s generosity… We can’t believe it,” breathes Mr. Nichols, his voice shaking.
A very expensive process
Although the amount accumulated by the family may seem impressive, it is only a part of what the assisted reproduction process can cost.
Kevin Nichols, Marie-Philippe Dufour and their daughter Jade met Vegas Golden Knights hockey player Jonathan Marchessault when he visited the CHUL in Quebec a few weeks ago. Provided by Kevin Nichols
As of November 2021, RAMQ covers an in vitro fertilization cycle, which typically costs between $10,000 and $18,000. However, one cycle is not always enough to enable reproduction.
And that’s without any services not covered by the Quebec government, such as buying eggs from a bank. According to L’Actualité magazine, a single plot of land cost around $21,000 plus taxes in 2016.
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