Originally published by the Comox Valley Record, August 4th 2022.
By Andrea Rose
Beckett Williamson loves birds, people, strumming his ukulele, and his brand-new scooter. At only 2 years old, he might just be one of the youngest riders yet for the Comox Bike Co YANA Ride annual fundraiser, and he is busy scooting the streets in support of the organization that has helped his family over the last 2 years.
Sally and Thom and big brother Baden welcomed Beckett into the world a few weeks early and many miles from home in June of 2020. 6 weeks before his due date, during a stress test, in-utero concerns indicated that Beckett would need to be born earlier than planned. The Comox Valley Hospital isn’t set up to support infants born before 37 weeks, and the family received the news that they would be delivering their baby in Nanaimo. Before they left, they were introduced to YANA (You Are Not Alone), who would help them along the difficult journey they were about to embark on.
“Basically from when we first got to the hospital here…It was almost instantly that we were presented with an envelope with information from YANA and $200 to travel down to where we needed to go, which ended up being Nanaimo,” explained Sally, who emphasized just how much the support meant to them. They’d known about YANA through past fundraising events, but hadn’t been the recipients of their support before, and were moved by what it felt like to be on the receiving end of such a gift.
The couple travelled to Nanaimo that same day, and on the evening of June 20th Beckett was born at the Nanaimo Regional Hospital, 6 weeks before his due date. He had some breathing difficulties that required intubation, which is not uncommon for many preterm infants, but as the hours and days passed there were growing concerns beyond what was usual for a preemie baby. As symptoms of another underlying condition started to present themselves, it became clear that they wouldn’t be returning home as soon as they had hoped.
Within a couple of days of his birth, Beckett and Sally were sent to Victoria for further testing and a higher level of care. The family reached out to connect with YANA and immediately felt carried and supported by the organization, who arranged for a suite near the hospital where the family could all be together, big brother and grandparents included.
“It was paid for, and we didn’t even have to worry,” says Sally. “It was amazing, because being told when we got to Victoria that there was something else wrong with Beckett and it wasn’t just preemie, obviously we weren’t in a state of mind to really be thinking about anything. We were in our darkest place ever for the 6 weeks in the NICU, and we didn’t have to worry about a place to stay.”
A few weeks after being in Victoria a room opened up at Jeneece Place, where Sally and Thom could be even closer to the hospital as they anxiously waited for answers.
It was almost a month of investigation and testing before they discovered that Beckett had a rare genetic disorder, Prader-Willi syndrome, which affects about 1 in 15,000-20,000 live births, and explained the difficulties Beckett was having with breathing, eating, and thriving as a newborn. The family was finally able to return home after 6 weeks of being away, grateful for YANA’s support throughout their time away, but knowing that their journey had only just begun.
Prader-Willi syndrome impacts growth and development in a number of different ways. The low muscle tone associated with the condition meant that Beckett would be fed via NG tube for the first 9 months, as well as having delays with walking and talking. The genetic disorder also impacts his growth hormone production, as well as sleep apnea, low metabolism, and seizures.
So far there is no cure for Prader-Willi, and there will be many hurdles for Beckett and his family in the years to come. Over the last 2 years, Beckett has bravely undergone a number of surgeries and the family has made multiple trips to Victoria for various specialist appointments, and YANA has been able to provide them with the assurance of support the entire way.
YANA’s funding and accommodation programs are available to all Comox Valley families who have to travel outside of the community for the medical care of a pregnant mother, or a child under 19. There is no lifetime maximum, and no limit to the number of trips made or the amount of time away, allowing families like the Williamson’s to know that every step of the way, no matter what comes their way, YANA would be there to help.
“The support of not having to worry about where we’re going to stay. The stress, and the booking, and the finance – we have to take time off to take him to appointments. It’s such a great thing to know there’s that support for us and our family.” Sally explains, pointing out what an important service this organization provides, especially to families who are welcoming preterm infants that can’t be born in the Comox Valley. “It’s instant. You go in, and you’re like – oh my God I have to travel to have this baby. Here is an organization that can help you travel.”
And the Williamson’s can hardly wait to give back and provide the support that comes full-circle thanks to the generosity of this community. This is the first year the family has fundraised and participated in the YANA Ride, and the timing couldn’t have been better.
“He (Beckett) got a scooter for his birthday and loves it…and then we heard about the YANA Ride, and we were like, ‘yes’, it was the perfect time, because he just loves to scoot, and to be able to help other families,” says Sally. “He’s going to scoot around the block, nothing far because he can’t go very far…and then we’re going to have a barbeque at our place after with friends as well.”
The outpouring of support for Team Beckett has already been enormous, as friends and family have rallied behind their efforts to give back to YANA, as well as big brother Baden, who will also be riding alongside his little brother to help families just like theirs.
“It’s such a community.” Sally shares. “It really is just like, this is our community, let’s take care of our community, let’s take care of each other. We are proud to live in the Comox Valley and proud to support.”
Anyone, anywhere, can ride and raise funds for YANA for the 2022 Comox Bike Co YANA Ride. Between August 1-21st, individuals and families across the community and beyond are invited to register, join a team, raise pledges, and chart their own course, ending off at the Comox Marina finish line on Sunday, August 21st for a massive community Party in the Park.
All money raised through the Comox Bike Co YANA Ride goes towards helping families like Beckett’s, and the countless others who benefit from YANA’s support each year. To register, make a pledge to little Beckett or to another rider, buy 50/50 or raffle tickets and participate in the silent auction, visit https://raceroster.com/events/2022/60728/comox-bike-company-yana-ride.