General News
Beckett’s family grateful YANA has been there for the long haul
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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.
See You At The Finish Line!
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Originally published by the Comox Valley Record, July 21, 2022
You’ve registered, you’ve rallied, and you’ll ride between Aug 1-21st. What comes next? You’ll reunite at the annual Comox Bike Co. YANA Ride Party in the Park! Happening on Sunday August 21st at Comox Marina Park, this day will be all about celebrating the amazing riders fundraising for YANA families.
All riders should plan to arrive between 11am-2pm for their chance to win great prizes from this year’s generous sponsors! The community celebration will include a silent auction, beer garden, live music, activities, and delicious snacks at local food truck favourites. One lucky YANA supporter will win the growing 50/50 jackpot and the top 300 fundraising riders will pick up their original 2022 YANA Ride t-shirts courtesy of Dr. Andreas Conradi.
Other prizes and raffles include an Old House Hotel Spa and Dining Package valued at $1000, and every registered rider in the park will have the chance to enter to win the grand prize draw of a $500.00 gift certificate at Comox Bike Co.
All funds raised through the Comox Bike Co YANA Ride go towards YANA: You Are Not Alone. Register make a pledge to a rider, buy 50/50 or raffle tickets and participate in the silent auction starting Aug 1st by using the links above. See you at the finish line!
We Raised 10 Grand in 10 Days!
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Balfe Martin Private Wealth RBC Matching Campaign
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Balfe Martin Private Wealth of RBC Dominion Securities is making the most of the Comox Bike Co YANA Ride fundraiser by offering to double ALL donations over $100 from July 5-15!
The goal is to raise 10 grand in 10 days for Comox Valley families in need. As well, Balfe Martin Private Wealth is also doubling ALL donations that are shared via Facebook or Instagram with the hashtag #ComoxBikeCoYANARide!
YANA is a local non-profit organization that works to improve health care access for Comox families by providing accommodation and travel support to children under 19 and pregnant mothers. By doubling your donation over these 10 days, you can help YANA go that extra mile for those in need of their support.
Registration donations and pledges to riders all count for the matching contribution, so visit https://raceroster.com/events/2022/60728/comox-bike-company-yana-ride to double your donation today!
Riding Together Again
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The 2022 Comox Bike Company Ride is a hybrid event that brings together the best of both in-person and virtual events!
Registration opens June 1 and is entirely by tax-receiptable donation.
Grab your favourite biking buddies, ride and gather pledges, and join us for the biggest Party in the Park we’ve ever seen! Riders and teams can chart their own course and ride anytime between August 1st and 21st, then join together in celebration at the finish line on Sunday, August 21st at Marina Park in Comox. Riders, family and friends will arrive at the Party in the Park between 11:00am-2:00pm, and entertainment, activities, treats, a huge 50/50 draw and Old House Hotel & Spa raffle package, beer garden, prize draws and more will continue through to 4:00pm.
Every dollar raised goes directly to supporting Comox Valley families who need to travel for the medical care of their child or a pregnant mother.
Can’t make it on the 21st? Raise pledges and ride anytime between August 1-21st, and join in whatever way you can!
Ride WHERE you like, WHAT you like, and HOWEVER it suits you to show your support for YANA!
- What: Ride whatever you like, if it’s powered by you and it has wheels, it’s a fit for this ride! Gravel bikes, road bikes, mountain bikes, even training-wheels and trikes, are welcome to participate in this event.
- How: Challenge yourself or set a goal and raise pledges while you do! Whether it’s a team challenge, a climb the height of a mountain challenge, or a ride-a-little-bit-every-day challenge, do what motivates and inspires you to ride for YANA families.
- Where: Hit the trails, cycle the city streets, or ride laps around the neighbourhood, chart the route that works for you, just make sure to join us at the finish line on August 21st!
For more details and information on this year’s ride visit: https://www.yanacomoxvalley.com/yana-event/ride/
For the Comox Valley Record version of this article, visit: https://www.comoxvalleyrecord.com/community/2022-comox-bike-co-yana-ride-combines-live-and-virtual-versions/
No Matter How Many Times You Call, You Are Not Alone
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Originally published by the Comox Valley Record, April 13, 2022
Andrea Rose, Special to the Record
Sarah and Kyle Lesage are no strangers to YANA.
Their first time encountering the generosity and support of the community-funded organization dates back to 2017, when their first-born child, Harvey, was airlifted to Victoria for suspected pneumothorax shortly after he was born. YANA was immediately there, supporting the family with money for food and travel. Harvey made a full recovery from what ended up being a treatable infection, and after three days the family returned home, full of gratitude for the support they received while away.
No more than a year later, Sarah, Kyle and Harvey were anticipating a double-blessing to join their family; twins were expected to arrive sometime in the late fall, but in August of 2018 Sarah’s water broke at just 27 weeks pregnant. Much like their big brother, the twins seemed to have their own grand entrance in mind, which included Sarah being emergency-airlifted, this time to Vancouver, to monitor and prepare for a very early arrival.
The family also knew that they could rely on YANA once again. There are no limits or lifetime maximums with YANA’s funding and accommodations programs, and the couple was blown away by unconditional support from what they’d come to know as a true gift and lifeline, right from their very own community.
“We were hoping we wouldn’t (need it) this time around, but alas, YANA was there again to offer support,” Sarah says, describing how YANA was there almost immediately, no questions asked.
“I felt extremely guilty for needing to rely on YANA for a third time. But they made me feel so loved and looked after. Like no strings attached, guilt-free kind of feeling.
“(We received) $200 in cash before even leaving the hospital, and Kyle was put up in Jeneece Place, so the stress of where he was going to stay was immediately taken off. We could focus on our baby girl. We once again were overwhelmed and humbled by the generosity YANA gives. It truly is a beautiful organization.”
Thankfully, Elenni’s condition turned out to be much less critical than was first suspected; there was no brain bleed, and the medical team felt that her breathing and feeding issues were due to her being born three weeks before her due date.
She was placed on an NG tube and stayed in the NICU for a total of 10 days.
During her time at Jeneece Place, Sarah made friends with another mother of a 25-week old boy who was also far from home and struggling to make ends meet.
“She had to raise funds through GoFundMe in order to pay for her stay and lost wages. I cannot imagine that added stress along with trying to care for a baby who needs extra care. I think every community needs an organization as helpful and loving as YANA.”
The realization of just how special an organization YANA is, and just how much it truly takes a community to make what they do possible, has made it a no-brainer for the couple to jump in and help any way they can. Kyle, among myriad talents, is an experienced videographer and technological guru, and has helped the organization pull off the complicated live streaming component for YANA’s Big Love virtual event for the last two years, and it’s been an honour for them to give back.
“(Kyle) has seen firsthand how the whole community backs YANA,” said Sarah. “Having YANA at your side is like having the whole Valley holding your hand. We are humbled by being part of the giving and receiving end of YANA and the Comox Valley’s generosity.”
Over the past five years YANA has supported the Lesage family through three births, four babies, and many long days and sleepless nights away from home. Thanks to the incredible support of a community that continues to say yes, families like the Lesage’s can know that no matter what may lie on the road ahead, they don’t have to walk a single one of those days alone.
Off The Page Podcast: Kelly Barnie of YANA Comox Valley
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Originally published by the Comox Valley Record, April 13, 2022
by Erin Haluschack
Even though it’s been more than 35 years since she started the grassroots organization, Sandra Williams’s legacy continues to live on in the Comox Valley through YANA – You Are Not Alone.
The community organization offers help to Comox Valley families who need to travel for medical treatment for a child or for a pregnant mother, with the goal to improve access to healthcare by providing travel funding and accommodation.
“Exactly what she started with; the same mission, the same mandate, as she started then is exactly what we do now,” said Kelly Barnie, executive director of YANA on the latest episode of Off The Page, which drops April 13. “I mean, things look different, they feel different, but the support is still the same.”
Barnie talked about the challenges YANA faced with the pandemic, particularly as their models for fundraising were primarily event-based.
She credited the community for stepping up despite having so many events shut down.
“We actually did better with a lot of the fundraisers (than before COVID), because when people could have said ‘no, sorry, I can’t, I’m sorry, we just can’t support this year,’ everyone found a way to do it. That part has been the hardest part of it operationally… but the most rewarding right to show that we can come through it.
“Our families don’t have a choice of whether to take the thing that’s hard and decide to do it or not, they just do… it just has made it even more clear how important it is to be able to say, ‘yeah, we got you.’ ”
As for finding a balance between helping families with some of the worst situations they may ever face and taking care of herself and her staff, Barnie said there are times when family scenarios are particularly difficult.
“There’s some really hard situations and stories that are hard on the heart for sure. But it is very easily washed away. When we can do that follow-up email and it says every time you are not alone, just know we’re here every step of the way. And if I can reassure someone of that over the phone, it makes every one of those minutes… worth it to hear that sigh of relief from a family.”
As for Barnie’s most memorable story or family she’s worked with? You’ll have to listen to the podcast to find out.
To listen to the full episode, download Off The Page on Apple Podcasts, Google Podcasts and everywhere podcasts are heard, or visit cvoffthepage.buzzsprout.com. New episodes of Off The Page drop every Wednesday.
To submit podcast topics or guest ideas, email offthepage@comoxvalleyrecord.com.
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The Valley Vonka and the Hot Chocolates Factory fundraiser (where 100 per cent of donations go directly to YANA) wraps up shortly – make sure to pick up your chocolate bars by donation in order to find one of six golden tickets to win an amazing prize.
Chocolate bars can be found at the Record office (407D 5th Street, Courtenay), Parker’s Appliance & More, Old House Hotel & Spa, Kingfisher Oceanside Resort & Spa, Canadian Tire, Hot Chocolates, Sure Copy Courtenay, Quality Foods Comox and Peninsula Co-op (Comox).
Whatever Takes You Far From Home, You Are Not Alone
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Originally published by the Comox Valley Record, April 4, 2022
Andrea Rose, Special to The Record
Jason and Haley Lutter and their son Henrik – who goes by ‘Henry’ – were introduced to YANA during an appointment at their accountant’s office. In an off-topic conversation about a torticollis diagnosis Henry was given at just a few weeks old, Jason’s accountant, who was familiar with YANA’s programs, suggested they reach out for the upcoming trips the family would be making to Victoria in the coming months, part of the therapy to treat Henry’s condition.
Torticollis is a postural issue where the muscle on one side of the neck is shorter than on the other side, causing a variety of physical challenges and often requiring physiotherapy and intervention to ensure it’s corrected early. Along with regular physiotherapy appointments locally for nearly two years, the family was also required to make multiple trips to Victoria for a special helmet therapy.
“When (Henry) was first diagnosed I don’t think we understood fully what it might entail,” said Haley. “I think, in my mind, it was going to be a couple month thing and it would be resolved…he had some gross motor delays, and as well as why we ended up needing to access YANA was for the helmet therapy.”
Henry is the couple’s first child, and along with learning and adapting to the overwhelming newness of parenthood, they were also learning how to support Henry’s condition, managing multiple appointments, doctors, and eventually, overnight trips down-Island. After a short visit to the office for a simple intake, YANA quickly stepped in to help by taking care of many of the details and allowing them to focus on their child.
“The financial support was obviously huge, but for me, (it was) just having other people we could talk to and logistically make plans where we could stay,” said Jason. “I was really appreciative of YANA for making the actual bookings and scheduling that part out. That took a huge weight off our shoulders so that we could actually focus on preparing for the physio.”
Haley agreed with Jason, explaining that it couldn’t have come at a better time.
“When you’re dealing with all other stresses… anything that can be taken off your plate is a really big deal. I was on maternity leave at the time and Jason was changing careers at the time, so it kind of came at a time of more financial stress for us too.
Haley said at first, she felt like they might not qualify for support.
“When Laura first said YANA, I thought, ‘no, no, that’s not for us, that’s for families with extreme financial need.’ I think it is nice that it’s for everyone in the community, it’s all inclusive. It’s awesome that it’s mostly community members supporting their own community, it’s really special.”
Access to YANA’s support is a low-barrier process for any family required to leave the community to access medical care for a child or pregnant mother.
For Jason and Haley, this meant the organization took care of arranging accommodations for each trip they made to Victoria, as well as providing funding to help alleviate some of the costs of traveling and being away from home.
“It was amazing how easy it was. We just told them when we were going to be down there and they just booked it for us,” Jason explains, suggesting that YANA, which stands for “You Are Not Alone,” couldn’t be a more fitting name for the organization that not only relieved some of the logistical stress for them, but also provided them with a sense of community and support.
“It is a good title for the organization. It does make you feel like you’re not alone, there’s people you can reach out to for assistance. It made us feel like we were not alone.”
Henry doesn’t have to make any more trips to Victoria, and he’s nearing the end of his physiotherapy sessions locally. YANA was there for Henry and his family during the months they needed to travel for his medical care, providing them with a sense of comfort from their community that no matter how short or long the road, they didn’t have to walk it alone.
For more information and to find out where you can purchase your Valley Vonka chocolate bars, for a chance to win a golden ticket and the gift of support for YANA families, visit: https://www.comoxvalleyrecord.com/community/comox-valley-record-launches-valley-vonka/
When It’s Too Much on Your Own – You Are Not Alone
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Originally published by the Comox Valley Record, March 30, 2022
Andrea Rose, Special to the Record
If you were to meet 11-year-old Nikko Segriff you’d immediately see a bright, sparkly-eyed boy with the most infectious mile-wide smile. Nikko loves reading, sports, and playing practical jokes on his parents, and while he always finds a reason to be happy, life hasn’t always been and isn’t always, easy.
Nikko’s life in Canada was off to a rocky start before his second birthday. Kathy and Lino adopted Nikko from an orphanage in southern Vietnam. Prior to arriving the couple was made aware that he had a pre-existing condition which meant he had a tracheostomy in place to assist with breathing.
As far as they understood Nikko would be able to have his trach removed in Canada, and was otherwise 100 per cent healthy, ready to travel to his new home in the Comox Valley.
After a number of months in Vietnam, Kathy and Nikko boarded their flight to Canada, accompanied by a friend who was providing them with extra support for the journey home. During the flight, though, Nikko took a turn for the worse.
“Nikko’s lungs were filled to the rim with infection and with the cabin pressure, he couldn’t breathe, and all of sudden, all this infection was coming out of his trach,” explains Kathy.
“We had to do a blow-by with the oxygen for seven hours to keep him alive,” Kathy recounts, acknowledging what a miracle it was that he made it to the emergency landing where the paramedics met them on board the plane.
Nikko was eventually flown to Victoria General Hospital where he would stay for the next 12 weeks with his mom and older brother, Kalin, by his side.
“It turned out he had a millimetre of airway in his trachea, so the trach was not coming out anytime soon,” says Kathy, who was finding it more and more difficult to cope with the reality that was unfolding around her.
Kathy knew about the support available back home from YANA, but she was finding herself reluctant to reach out for help. The trips and costs began to add up, and so did the stress and challenges of the long and lonely journey. After a number of emails and offers for help from someone at YANA that knew Kathy and her situation, Kathy finally found the courage to reach out for support.
“Of course I knew about YANA, but it was really slow for me to connect the dots that I needed YANA. I kept thinking that it was something that I should leave for other people,” explains Kathy.
“I was the person who would go to fundraisers, I was the person that was donating…I did all that as a single person, and then all of a sudden I was a mother.”
It was during Kathy’s first visit to the YANA office that she felt she could finally unravel and admit just how hard it had become being a mother who was caring for a sick child.
“It was the first I’d sort of said… ‘I’m scared.’ It was the first time I said, ‘this is really hard,’ things that you can’t share with medical staff because they’re just trying to do the medical things, and you can’t share it with sometimes anyone else, because other people that you’re around have sick kids too.”
There was a sense of relief and belonging for the family after embracing the support and community that came along with no-strings-attached assistance for travel and accommodations. YANA provided the family with daily funding each time they were away, as well as covering the costs of Jeneece Place and the various hotels they stayed at over the years.
“It very quickly became obvious, as cliché as the title is, that I wasn’t alone anymore. It wasn’t the money part of it.”
Kathy shares that while they may have been able to find an alternative to offset the costs of the regular trips to Victoria without YANA’s support, any option available would have put a huge additional strain on everyone.
“At some point I think I just decided that when I could start being able to help again, that I would, and that kind of released me about the guilt I was feeling from accepting financial support,” explains Kathy.
“When I contact YANA and I have another appointment, there’s someone who knows this is my fifth appointment in one month…somebody knows the little markers of your bigger journey.”
Nikko’s journey and challenges continue even with the major strides he’s made with his health over the years. Nikko has chronic lung deficiency as well as permanent scarring from the trach and the infection in his lungs, limiting his lung capacity and requiring him to pace himself during physical activity. After 14 or 15 surgeries to his trachea and lungs, Nikko now has 100 per cent airway and can eat and drink, and he’s getting stronger every day.
“He’s a happy kid. He’s never looking for anything to make him unhappy. He sort of sees the humour in everything, and he’s always been easy to be a mom to,” Kathy says about her son, who lights up their home with laughter and jokes every day, and is finally able to participate in gym class at school and extracurricular activities like volleyball.
“He’s so athletic,” Kathy boasts, amazed at just how far he’s come.
Nikko’s older brother Kalin, who was adopted from the opposite side of Vietnam before Nikko, has been a huge supporter for his brother through the journey and all of his surgeries and challenges along the way. The family continues to feel the love from their community from the overwhelming gift of support after nearly eight years and 40 trips they made, and continue making since connecting with YANA.
Nikko’s family was lovingly supported through countless procedures, surgeries, and routine appointments in Victoria. Because of this special, generous community, YANA was able to assure them that through their most difficult days and fearful moments, no matter how many appointments, trips, or years that go by, they would be by their side, letting them know, “You Are Not Alone.”
To find out where you can purchase your Valley Vonka Chocolate bars in support of YANA, visit: https://www.comoxvalleyrecord.com/community/comox-valley-record-launches-valley-vonka/
No Matter How Long You’re Gone, You Are Not Alone
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Originally published by the Comox Valley Record, March 23, 2022
By Andrea Rose, Special to the Record
Looking at 3 year old Aaron Hong, you wouldn’t think that only 6 short months ago he was reaching the end of an aggressive chemotherapy treatment to battle a leukemia diagnosis he was given in the winter of 2021.
It was early in the new year that Aaron’s routine blood work started showing a decline in his platelet count. Otherwise a healthy, energetic toddler, Aaron didn’t come across as being unwell, but concerns grew as symptoms like fatigue and bruising began appearing and Aaron’s platelet count continued declining.
The family was referred to BC Children’s Hospital in Vancouver to investigate his symptoms further. The doctor who saw Aaron commented on how healthy Aaron appeared, lending some optimism to the family who was remaining hopeful, although anxious for answers. But the phone call they received shortly after leaving the hospital was not the news they were hoping for.
Shortly after their appointment, Aaron’s parents, Michelle and Chenyu, received a phone call from the doctor, “I usually don’t like to tell people this over the phone, but the blood results look like he has leukemia,” Michelle recalled him saying, “he needs to be admitted right away.”
“It felt like a death sentence.” said Michelle, describing how it felt during the first moments they learned of Aaron’s diagnosis, admitting she really didn’t know much about Leukemia then.
“I always knew in the back of my mind that low blood-platelets are associated with possible leukemia, but I think it was just so early it was hard for them to see.” she explained. “I asked how long we have to be in hospital for, he said, ‘he needs to be inpatient full-time for 6 months’. I lost it. I really couldn’t imagine doing this for 6 months.”
No family can imagine or prepare themselves for this kind of news, wrought with uncertainty and difficult decisions. The family had left behind a busy life, along with their older son Theo who stayed behind in the care of his grandparents. There would be no returning home for a while; Vancouver would become their home-away-from-home and there was no choice but to figure out a path forward.
Friends from the community suggested the family reach out to YANA for support, and soon after a social worker connected Michelle and Chenyu with the organization that would walk alongside them and support them every step of the way.
Aaron’s prognosis was really good, and after the 2nd and most intense cycle Aaron cruised through his treatment. Aaron has Down syndrome, and Michelle pointed out that while it isn’t uncommon for children with Down syndrome to have greater challenges with their immune system, Aaron continued to overcome obstacles.
“Even throughout the treatment, I still thought of him as a well child, although he had this serious disease,” said Michelle, who describes Aaron’s nature as being strong and resilient, even learning to walk for the first time in the halls of BC Children’s Hospital with the help of his parents and an IV pole.
“He just needs mama and papa”, Michelle said. “He was so little so he didn’t really mind being in the hospital as much as we did. All he cared was that we were there with him, we were his most important people.”
Aaron had his mama and papa there with him by his side, every step of the way, thanks to their community, family and YANA who helped make that possible. Along with monthly funding, YANA also provided the family with one of their furnished, downtown apartments within walking distance of BC Children’s Hospital.
“The apartment was exactly what we needed.” says Michelle. “More than what we needed.”
Michelle and Chenyu took turns being by Aaron’s side and staying in the apartment over the 7 months they spent in Vancouver. The apartment became a simple, safe sanctuary where they could recharge, cook, and come together as a family when Aaron was eventually given the green light for short visits. The short visits eventually led to longer visits back to the Valley until the family was finally able to return home last September.
Aaron and his family continue making trips to Vancouver as part of his ongoing care, and YANA continues to provide funding and support for every trip, and the family has no doubt about how special an organization it is to continue to be there every step of the way.
“It’s above and beyond. People were so jealous hearing about what we have…a lot of people are from out of town. We haven’t really talked to anyone else who’s had this.” says Michelle.
Aaron and his family needed to stay in Vancouver for 7 long months. Thanks to the incredible support of a community that deeply cares, YANA is able to say ‘yes’ to families like Aaron’s and countless others. YANA is able to let them know that however long they need to be away in order to be by their child’s side, no matter what, “You Are Not Alone”.
YANA (You Are Not Alone) is a community organization offering help to Comox Valley families who need to travel for medical treatment for a child or for a pregnant mother.
For more information and to find out where you can purchase your Valley Vonka chocolate bars, visit: https://www.comoxvalleyrecord.com/community/comox-valley-record-launches-valley-vonka/