Cindy Rabl and son Mercury spend a quiet moment together Tuesday. Mark Brett/Western News

Okanagan family with dying son getting much needed help

A young Penticton family with a dying son is being helped by a Kelowna fundraiser

The mother to a young son is bundling a lifetime of love into just a few short years.

While that may not be easy, it’s a commitment 28-year-old Cindy Rabl made to her baby son Mercury when his diagnosis with the rare neurological condition Alexander Disease was confirmed last October.

“I took it very hard. I have days where I find myself crying. I love my baby dearly and it’s definitely hard to know that he’s going to leave us one day,” said Rabl, a single mom who also has two daughters, Desirae, eight, and Mireya, two. “We just try and enjoy every minute that we can with him, every minute that we have with him is special and precious.”

According to medical statistics, worldwide only 500 people have been diagnosed with Alexander Disease since the doctor it’s named for first described it in 1949. It is a disorder of the nervous system impairing those functions resulting in development delay, severe intellectual disability and death.

“It’s progressive and there is no cure for it and for kids who showed signs as early as Mercury, they don’t normally live past the age of six,” said Rabl, who was alerted to the situation in September when Mercury began having seizures. “We were flown to Children’s (Hospital) and then we had the genetic screening test done and it was confirmed.

“Mireya is still too young to understand but Desirae does and she knows one day he will die, I remember when Mercury had his G-tube surgery (feeding tube) and she asked ‘did Mercury die?’ and I said ‘no, not today but one day soon he will.’”

Compounding the problem is the fact the young family is subsisting on a very limited income and their vehicle is not working, nor she can afford insurance even if it was.

“Just putting food on the table,” said Rabl of her spending priorities.

However, something happened the last time they were in Vancouver while she was staying at Canuck Place with Mercury which which gave her some hope and a renewed faith in humanity.

She was approached by a staff counsellor who told her about someone wanting to offer support.

“I just cried when I heard that,” recalled Rabl. “I’ve never had someone wanting to help out like that before and I was just so grateful for people like that wanting to help out families like mine who have a sick child and are struggling financially to make ends meet.

“It’s amazing that there are people out there who will do that.”

Shortly afterwards she met the man who is to be her family’s benefactor, Kelowna’s Brad Krauza, CEO and marketing manger of the online publication Gonzo Okanagan.

As he has many times in the past, Krauza has organized a fundraising golf tournament, and for the first time a concert afterwards. The Music Industry Golf Tournament and Festival and will take place at Sunset Ranch Golf Course in Kelowna on June 15.

Having worked with Canuck Place many times in the past, he approached officials there about finding someone requiring help and one of the names he was given was Rabl’s.

From his previous experience Krauza knows for those staying at Canuck Place “the world doesn’t stop turning at home,” and bills need to be paid. It can be very difficult for the family, but he still wasn’t quite ready for what he would find in Penticton.

“It’s tough walking away and knowing the cupboards are bare. It’s tough to be brave when you see all that,” said Krauza, who has since already brought the family some grocery gift cards. “You never know how long you’re going to survive but, like Cindy, when you know for a fact that, unless there is a miracle, that five or six years is the duration of your child’s life, that’s heart wrenching.

“We just want to help keep some sort of normalcy for her and her children and just take away just one little part of the stresses that the family’s going through and hopefully be able to fill her cupboards full of food.”

To that end, donations are being accepted from people who aren’t able to make the concert. Krauza also would like to be able to provide a vehicle and insurance as well as financial help for the family.

Performing at the music festival are Honeymoon Suite, The Younguns and Appaloosa. Tickets are $39 and for more information go to: https://gonzookanagan.com/gonzo-okanagan-music-industry-golf-tournament/

A GoFundMe account has also just now been set up for people who would like to help: https://www.gofundme.com/gonzookanagancom-local-family

 

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