YARMOUTH, N.S. – After what has so far been pretty much a lifetime of sickness, of hospitals, of doctors, of treatments and of worry and fear, April Parent is looking forward to the chance for her seven-year-old son Lucas to not be a patient, but to just be a kid.
He’s going to get that chance as the Nova Scotia chapter of the Children’s Wish Foundation prepares to grant Lucas’s wish by giving him and his family a camping trailer.
The presentation is going to be made Tuesday, June 26, at Castle Lake Campground in Melbourne, Yarmouth County. While Lucas has made a wish for a camper, he doesn’t know he’s getting one purchased by the Children’s Wish Foundation on Tuesday. His mom says telling his story beforehand won’t ruin the surprise, as Lucas is unable to read and still struggles to understand certain concepts, such as this one.
Plus, we are swearing everyone who reads this story to secrecy, so sssshhh!
April Parent can barely contain her excitement for what is going to be happening for her son.
“The plan is to utilize the camper for years to come and that Lucas has this space for everyone to spend time together. We have – myself and my partner – five kids all together so this is an opportunity for them to play their summers away,” she says.
“And for Lucas, to be able to go and just have him relax and completely be able to leave behind anything that is a reminder of the IWK is a great bonus for him. He’s going to get to be a kid.”
Lucas was diagnosed with Primary Immunodeficiency, Antibody Deficiency when he was around 18 months old. It’s since changed to become Common Variable Immune Deficiency (CVID).
What it boils down to, his mom says, is Lucas is unable to build or make his own immune system. And so this puts him at constant risk for infection and illness, which can turn into life-threatening situations.
Lucas had originally wished for a trip to Disney World, but because he has so many sensory issues his mother felt he would struggle and be overwhelmed in that environment, whereas camping together as a family will be a more relaxing pace and Lucas loves to be outside.
And Parent says it’ll be a nice break from the monthly trips to the IWK where Lucas undergoes transfusions each month, while also meeting with a team of doctors and other medical professionals who provide him with treatment.
The transfusions are important to his well-being.
“Before transfusions, he would be very ill all the time if he was exposed to any germs,” his mom says. “A common cold for him would be pneumonia in 24 hours. When he was younger we enrolled in daycare and we were lucky if he got there maybe five days a month because every time he went he was getting sick.”
The year before he started transfusions Lucas had 22 infections in one year. That impacted his life greatly.
“He wasn’t able to have a quality of life because if he went to the park and played with any kids, you could guarantee he would get a bug out that. He would be sick,” Parent says. “Or he’d get something and things would become complicated and he’d end up on a second and third antibiotic before he’d even clear it.”
Even though Lucas has had all of his vaccines, and even extra ones, his body still forgets that.
The transfusions, while building in him an immune system each month, are by no means easy. His veins are very poor so in the past it would take nine to 12 attempts to get an IV in him. For Lucas it was stressful and frightening.
Although this also poses risks to him, eventually a portacath was implanted into his chest instead.
The transfusions that Lucas receives, and what needs to be extracted and purified from blood that is pumped through his body, are made possible by 1,000 to 10,000 blood donors each time. It further highlights the importance of blood donation, his mother says.
AT THE WISH FOUNDATION
Jacob Rafuse is almost as excited as Lucas’s mom that this little boy’s wish is about to come true. He’s the Atlantic Wish Coordinator for the N.S. chapter of the wish foundation. He’s known Lucas and his family for a long time. They've been involved in many Wish campaigns and activities.
“I’m super excited to do these wishes. For me it’s like I get to be a light spot along that journey, along that storyline where sometimes there may not be a lot of light spots,” Rafuse says. And the wishes don’t just benefit the child, he says, they also benefit the families who really could use the break or distraction from constant hospital stays and medical treatments. And sometimes it’s even more far-reaching that.
“We always say a wish normally affects about 200 people, from immediate family to doctors and nurses to friends in the community and the schools,” he says.
It’s why fundraising isn’t just important to the wish foundation, it’s vital.
“All of the funds that we use to grant wishes comes from our amazing support systems we have in the community and with families and with organizations and corporations. Without them we would not be able to grant wishes,” Rafuse says.
Since its inception, and as of June 20, the Nova Scotia chapter of the Children’s Wish Foundation has granted 1,119 wishes in Nova Scotia. The foundation is working on 71 approved wishes and has 12 kids in the referral process.
The criteria for referral changed years ago. Whereas before children had to have a terminal illness to be granted a wish, now they can be referred if they have been diagnosed with a high-risk, life-threatening condition. Rafuse says with advancements in treatments and medical procedures, not all conditions are terminal, which is good – even though for a child they are still going through a lot of medical difficulties in their lives. And for many, these are life-long difficulties.
Lucas’s mom sees no end to the monthly transfusions her son receives. Afterall, they are his lifeline.
“The transfusions are to give him an immune system, so if he gets exposed to something he has a better chance fighting it,” she says.
For Lucas, and also his mom, it’s often an emotional, physical, mental and financially difficult path to constantly have to travel on. Which is why Parent says her family is overwhelmed with the generous wish Lucas is about to receive.
Castle Lake Campground owner Walter Spinney has also donated the cost of the family's campsite for the entire 2018 camping season.
“That’s not something he had to do at all,” Parent says. “It was going to be hard because we weren’t expecting this to happen so quickly and so my budget is tight as I have to plan each trip to the IWK. I really, really I can’t thank him enough for that.”
“This will be the first time we camp as a family. We’ve put a tent in the backyard before, but it’s not a ‘go camping, go enjoy your whole summer’ experience,” she says. “We pretty much intend from the day the camper is presented to Lucas that this is where we’re going to be all summer.”
To apply for a wish
To apply for a wish or to refer a child (with that child’s family’s permission, people can contact Jacob Rafuse, Atlantic Wish Coordinator, at 902-492-1113 (office), 902-401-4944 (cell) or by email at firstname.lastname@example.org.
A child has to be between the ages of 3 and 17, be a Canadian citizen and been diagnosed with a high-risk, life threatening condition. But a child does not have to be terminal.