Pikwakanagan – At only 14 months, “Lil Kev” Verch doesn’t understand about SMA2 or the approval of the miraculous $2.8 million one-time drug which will give him a needed gene to be able to crawl and walk, but it is clear from his quick smiles he understands about the unconditional love of his family who rallied around him to find funding for the drug.
“We will be so grateful to one day be able to see him take his first steps,” his mom, Dana Pearce, said on Sunday. “He loves his sleigh and wagon, and we pull him, but he can’t move around on his own right now.”
Spinal Muscular Atrophy (SMA) is a rare genetic disease affecting one in 10,000 children. It causes the loss of nerve cells called motor neurons in the spinal cord and attacks the muscles causing weakness and atrophy. The earlier a child is diagnosed the better for treatment. Dana explained while now children in Ontario are tested at birth for SMA, this only began 10 months ago. Kevin’s disease went undetected for many months.
“He was able to roll over and clap and wave but at six months he started to lose the milestones he was achieving,” she said.
It has been a rollercoaster couple of weeks for the tot’s parents since finding out about his diagnosis on Boxing Day and then realizing his best chance for an active life was a drug called Zolgensma, which was not funded through OHIP. At an astronomical cost of $2.8 million, the family realized it would take a miracle or an unbelievable amount of fundraising to pay for the drug. However, just a few days after starting the fundraising campaign, the family received the news the drug would be given to Kevin through a funding program called Jordan’s Principle which ensures no First Nations child is left behind with health care needs.
“This replaces the gene he is missing,” Dana said. “There is no cure for SMA, but we are told this is the best option for him.”
Kevin’s mom, and dad, Brody Verch, had realized several months prior to their son’s first birthday in November he was losing strength in his lower limbs and trunk. While at six or seven months he could sit independently and play, reach for toys and grab them, he was slowly losing that ability and it was clear something was wrong. The family, who are part of the First Nation community of Pikwakangan, first went to the local Health Centre and from there medical appointments progressed until Lil Kev was seen at CHEO. It was on Boxing Day when his parents received the call telling them he had been diagnosed with SMA Type 2.
“It was something very hard to hear,” his mom said.
From this shock diagnosis the family quickly rallied together to find out as much as they could about the disease and what would be their child’s best chance for treatment. Fortunately, he is part of a large extended family full of support for him, including his grandparents – Jess and Tim Verch on his dad’s side and Mark and Joanne Pearce on his mom’s side – as well as his great-grandmother, Jamie Sarazin where the family lives. Lil Kev is named after three of his grandparents – Kevin, John and Garry.
SMA Type 2
Kev has SMA Type 2, with Type 1 being the most severe. His mom explained those with type one can have breathing and choking problems as well.
Because of SMA, Kevin was unable to crawl, walk or stand, and when he received the diagnosis at CHEO a plan was put in place to quickly combat the disease. The first plan was to administer the drug Spirnraza if it was approved by OHIP for the treatment. That drug is also very expensive at a cost of around $375,000 a year and would need to be administered several times in the first year and continually every four months for the rest of his life.
“He received the first shot on Thursday,” his mom said.
At that point they did not know if Kevin would receive approval for Zolgensma. Realizing Zolgensma was still the best chance for the child, the family had launched a GoFundMe page last week trying to raise $2.8 million for the treatment. It seemed like an incredible, impossible amount but they realized time was of the essence since Zolgensma needed to be administered before he turned two.
The fundraiser took off like wildfire, raising over $87,000 in less than a week. Dana said she was amazed and so thankful for the people who contributed and shared his story. While many supporters were local since Dana is from Deacon and Brody from Pikwakangan, some were total strangers.
“We are so thankful for people who wanted to help,” she said. “There are people we don’t know their names, but they helped us. There is support of people who know his story and just wanted to help.”
The family had heard about Jordan’s Principle as one possible funding avenue and pursued this as well to ensure Kev had the best chance of receiving the drug. His grandmother, Jess, had been working closely with the First Nation and speaking with the decision makers at Jordan’s Principle about the funding, so she was the first one to receive the news on Friday when he was approved.
“We’ve been in a whirlwind of emotions and now we’re in the clouds winning this lottery,” she said.
Dana said they were all so emotional to find out Kev would receive this much needed drug.
“It was something we thought might not happen,” she said. “Then this miracle happened. We did not expect this day to come so soon. We are so grateful.”
The fast approval was something which would not have been possible without the support of the First Nation, they stressed. The work of Dale Booth, Kerry Andrews, Chief Wendy Jocko and the Algonquins of Pikwakangan First Nation made a huge difference in making what they felt was impossible possible.
“The outreach, the true family that our communities have made us feel was heartfelt and beyond putting into word just how loved and cared for we were to help us get through this,” Jess said.
“If you don’t know exactly what Jordan’s Principle is please take the time to Google it and read Jordan’s story,” she said. “Because of one family, God bless them, our prayers have been answered. It truly is a beautiful, wonderful, overwhelming story and principle that was created.”
Jordan River Anderson was born with multiple disabilities and was in hospital from birth until his death at five. Federal and provincial governments could not agree on who should pay for his home-based care, so he never left the hospital. Following this the House of Commons made a commitment First Nations children would get the products, services and supports they need when they need them.
Acknowledging her amazement at how the story of Kev had moved so many people and spread so quickly so far, in an online post Jess encouraged Brody and Dana to “hold Kevin in your arms and give him a squeeze for each and everyone because this county and beyond had all eyes on him to help Lil’ Kev.”
Short Wait for Zolgensma
Before he receives Zolgensma, Kev needs to have an antibody test to make sure he can receive the drug, but his medical team doesn’t anticipate an issue and he should receive the drug within the month.
“With SMA, the quicker they are treated the better,” his mom said.
Now with the funding obtained they have closed the GoFundMe donations. Dana said the family is in contact with GoFundMe about how to proceed with refunds or with the possibility of forwarding funds to another SMA child in need since the family did receive the $2.8 million through Jordan’s Principle.
Despite the funding of Zolgensma, Kev’s family still has the reality of physiotherapy and other costs ahead.
“We have a long journey ahead of us, but we are hoping for the best for our Lil Kev,” she said. “All my dedication and time will be toward him with physio to help him. All Brody’s side and my side of the family are doing everything we can for him.”
Kevin’s story was featured not only locally but through media in Ottawa as the family reached out to have his story told in the hopes of securing funding. Dana said while she was quite nervous at first, it was important for her to do whatever she could to help her son. Sharing her story very publicly showed her the compassion and care of so many in the community, strangers and also made her aware of others in need.
“Thank you to all our family and friends who have helped out with trying to fundraise, sharing and donating for our little Kev,” she said. “It has really helped us keep our heads up and to stay positive that this day would come. We didn’t think that this day would come so quickly, but miracles do come true.”
The family is also grateful for the staff at CHEO and acknowledge what a wonderful resource this is so close by. From personal calls from specialists to the efforts made on behalf of the family, including allowing both Dana and Brody to be with their son despite COVID-19 restrictions at the hospital, they are grateful for the compassion and care they have received.
Many of the extended family have had their own positive experiences at CHEO being treated including Kev’s grandparents. His grandfather, Tim, was treated successfully for a brain tumour as a child at CHEO. He noted he never passes up on an opportunity to give back to CHEO.
“It is a great place,” he said. “Whenever anyone asks for donations for CHEO I always give because I know.”
Undoubtedly, one day Lil Kev will be able to tell the story too of how he was treated for SMA2 there and the $2.8 million miracle drug which made a difference in his life, as well as relating the wonderful story of the family and community which rallied around him.