With just a couple weeks to go before the New Years Eve Family Benefit Dance, organizers are busy soliciting businesses for donations and putting the finishing touches on the annual event.
Although the deadline for nominations had to be extended this year, organizers now have four local families that will benefit from the funds raised at the event. This year, the families share a common theme, each of them having at least one young child battling a rare medical condition.
Maggie Cartier, a member of the St. Paul and Community Family Benefit Group, says the New Years Eve event is truly a “family function” and is open to everyone to attend.
Along with being a dance, there will be a children’s zone set up, a candy bar, a silent auction, and other fun activities. This year the event is moving to a larger location, the St. Paul Rec. Centre.
Last week, the group introduced the chosen families to the community.
Eric and Verena Albrecht were taken aback when they found out about their nomination for the St. Paul and Community Family Benefit.
“We were surprised,” said Verena. “They called us, and we thought it was nice that people think about us and our kids.”
“We aren’t used to that,” said Eric, adding that in Germany, where the couple originates, “it’s not like that. You’re expected to find your way on your own.”
The Albrecht family faces a number of daily challenges, as both their daughters, Lisa-Marie, 12, and Emilee-Ann, 8, were born with serious medical conditions and require their parents’ constant care.
Both girls were born prematurely and underweight, and have conditions such as Bartter Syndrome, which causes kidney problems and hearing loss. The girls have required cochlear implants to aid in their hearing, and require dialysis and medications for their kidney problems.
The girls also have special dietary and eating requirements to ensure their health.
When asked about the upcoming benefit, both parents quickly made it clear that the money would go to their daughters.
“We feel it’s important to see it goes to them because it’s their life, their disease, their handicap. They are the ones who have challenges to face, more so than we do,” said Verbena.
Between the care for their daughters, and costs associated with their goal of obtaining full Canadian citizenship, and the assorted costs of living, the Albrechts regularly face thousands of dollars in expenses.
“We don’t know who nominated us,” said Eric, “We wanted to say thank you to whoever it was. It means a lot to us.”
When Joe and Melissa Deschamps found out their youngest daughter had a rare medical condition, they admit they felt sorry for themselves, but after numerous visits to the Stollery Children’s Hospital in Edmonton and support and prayers from family and friends, they soon realized that they were blessed to be able to take their daughter home after her treatments.
Rhiann, the youngest of three girls, was diagnosed with lymphatic malformation in February of this year after her parents noticed something wasn’t right.
“The condition affects her lymph system, on her throat, floor of her mouth and both sides of her lower face,” says Melissa, adding, “When your lymph system is normal when you get an infection it carries the fluid away from your body. When Rhiann gets an infection her body stores the fluid in those areas, which at times can cause issues with her breathing and eating.”
The Deschamps family was given two options for treatment for Rhiann, surgery or injections every six weeks. Melissa and Joe opted for injections and have been making regular trips to the Stollery since the diagnosis.
So far, Rhiann has had five injections and has to be put under anesthetic each time.
“This is a life long issue for her and we are taking it one day at a time,” says Melissa. “Her issue is rare so it is hard to say . . . what treatment will work best.”
She adds that it is tough leaving her other two daughters at home when bringing Rhiann to appointments.
“They are in great hands, but it’s hard for them to understand and cope with their little sister being gone.”
Melissa says she and Joe were surprised to find out they had been nominated for the benefit.
“I am thankful that we live in a great community with such great support. We are humbled by this and always think there is someone that could use this more than we can.”
Although she knew it was a possibility for her daughter Avah to be diagnosed with hemophilia, Caitlin Forry says the chance of a girl being diagnosed with the medical condition was rare and has resulted in some lifestyle changes for the four-year-old.
Avah’s dad also has the condition, which results in a person’s blood not clotting normally, says Caitlin. Her daughter was officially diagnosed with the condition in mid-November.
Prior to her diagnosis, Avah could take part in dance class and gymnastics, but has now been advised by doctor against many activities. After a number of visits with doctors in Edmonton, Avah can now get treatment in St. Paul if she does have a bleed.
“Honestly, I was surprised,” says Caitlin, of being nominated for the family benefit. “I didn’t really know how to react. I’m very appreciative, but I’m not used to being on this side of things.”
It’s been four years since Logan Gratton was diagnosed with a rare autoimmune disorder, and in that time, his parents, Terra-Lee and Maurice, along with their three other children, have made many trips to the Stollery hospital, and are regulars at the hospital in St. Paul, where Logan now receives his necessary treatments.
Now 10 years old, when Logan was six, doctors diagnosed him with Idiopathic thrombocytopenic purpura (ITP), which is a disorder that results in a person’s body creating antibodies against the blood’s platelets.
Every three weeks, Logan’s platelet count drops drastically and he is required to spend at least three hours in the hospital receiving a treatment, explains Terra-Lee.
But, despite her son’s diagnosis, she stresses that Logan sees himself as a regular boy and even continues to enjoy playing hockey.
“It’s been a trying time. The first two years were a lot of stress,” says Terra-Lee, but the family has learned a “new normal” and has fallen into the routine of Logan’s treatments.
The Gratton family was only made aware that they had been nominated as one of this year’s families to benefit from the upcoming New Year’s dance late last week.
“I was very surprised.”
Terra-Lee says the family has been dealing with Logan’s diagnosis for four years already, and feels there could be other deserving families out there, but, she views the benefit as a good opportunity to raise awareness about ITP and what Logan goes through each month.
Tickets for the New Years Eve Family Benefit Dance can be purchased at the Co-op Gas Bar in St. Paul, Kelly’s Closet in Elk Point, the Parent Link Centre at the Town of St. Paul building, and at the SPAN office.
Tickets are $15 for adults and $5 for children 12 and under.
Donations are being accepted and interested donors can contact Tammy Yuschyshyn at (780) 645-1327.
