We take many things for granted; mobility is often overlooked by many until it happens to us. Life is once forever and can change in an instant.
Lee Tarjan, 46, from Bonnyville, needs a new wheelchair van to get back to being active, helping others, and spending time with his three beautiful children. Lakeland Connect would like to help make that dream a reality for Lee with your help.
Tarjan was born with a genetic disease called Facioscapulohumeral Dystrophy, a type of Muscular Dystrophy passed down through his family for many generations.
Facioscapulohumeral Dystrophy is a disorder characterized by muscle weakness and atrophy. Tarjan started seeing the effects at the young age of 15-years-old.
“It started deteriorating my muscles in my biceps, and slowly, it captures different parts of your body over the years,” Tarjan said. “It’s more of a deterioration of your muscles, which makes you almost have skin and bone in certain parts of your body. But it also makes your body unable to use your muscles in those areas. And the way that I’ve seen this work is pretty much the more you use it, the faster you will lose it.”
Tarjan said he had taken it easy since he was about 20-years-old on his muscles to prolong the diagnosis of the inevitable deterioration.
“Before 2010, I was on my two feet. I was walking but having a tough time for the last few years before that,” Tarjan explained.
Tarjan used to DJ in the Lakeland area and kept many people smiling and tapping their feet while dealing with his internal struggle of slowly losing mobility.
“To better understand how this disease affects someone like myself, it becomes more challenging mentally than physically because every year I have to slowly adapt to new ways of maneuvering myself around and creating a comfort that keeps me going,” Tarjan said. “It also becomes very stubborn to my mind as I always just want to keep going, working, open my door or closet, and so on because my mind tells me I can when physically I just can’t.”
However, Tarjan refuses to give up and lets this disease control his life.
“This disease may have thought it’s won an ongoing battle as it keeps deteriorating my muscles throughout my body every year, but I will tell you differently,” Tarjan said. “I am an entrepreneur, a single father of three beautiful children. I have full final custody of and protect them with everything I can in life.”
Tarjan said even though he had the luxury of being married to the most beautiful woman in his life, his burden of Facioscapulohumeral Dystrophy had caught up to her as she had more expectations and needs to accomplish in her life. Tarjan accepted that his disease was complex for his partner to deal with and eventually divorced.
“I was not in this world to stop anyone from achieving those goals, and I have made terms to agree with our outcome; as long as I didn’t lose my children and can watch every hair on their head grow daily, that’s all I work hard for daily,” Tarjan said. “I am 46-years-old, started my own business in my late 30’s. I got married and started a family during that time, so I could earn what I could to provide for my family.”
COVID-19 pandemic created more struggles for Tarjan
The COVID-19 pandemic hit Tarjan’s cell phone repair business hard, and like many business owners, he struggled to stay afloat and was left with debt.
“It has been a hard run for sure, but I can keep everything at par, barely ever getting ahead, but always destined to do so,” Tarjan said humbly. “I’m like any other average Joe, my credit score is good, I owe taxes because I just failed at starting business correctly as many do, I have no assets, I’m a renter of a house that is very wheelchair accessible thankfully with great landlords, but rent is steep now that I’m on my own with my kids.”
Tarjan said, “COVID-19 took a toll on my business, leaving much-unwanted debt that I am thankfully able to manage, but only relying on work that I get every day, this meaning there is no time for a day off currently, but I’m sure after working very hard, I’ll get there.”
Dreams of taking children to Disneyland and seeing family in Kelowna
Tarjan, one day, dreams of being able to take his children, ages 11,10 and 8, to Disneyland and to visit family in Kelowna, B.C., in a safe wheelchair van.
“I want to experience more of life with them by traveling across Canada, letting them meet more family and experience so much that Canada and USA have to offer. To do this, I need reliable and efficient transportation for wheelchairs,” Tarjan said.
Many people have told him to start a GoFundMe to help raise the money to purchase a reliable wheelchair van, but his pride kept him from doing so.
Over the years, he provided himself with transportation by purchasing former taxi wheelchair vans that turned out to be lemons.
“Since 2010, I have bought three wheelchair vans from a taxi company in Calgary because they cannot insure them for commercial use after so much mileage. This being said, the vans are already modified but worn down inside and out. With much cost after the purchase to make it last for me, I’ve come down to a point where it’s time for a fourth van purchase to get away from home with my family and experience more with them,” Tarjan explained.
“This time, I cannot afford to run the cycle that I have done in the past, and I’m just not wanting to keep falling into a van that is so unreliable.”
Tarjan’s credit rating is good, meaning he can get a new van from a dealership, but modifying the van can cost $40,000 more or less, and no bank wants to cover that amount for a minivan.
“This has always been an obstacle every time I have perused getting a van from a dealership,” Tarjan said. “So what I am asking here with the GoFundMe is a chance to go places in life, not for myself but my children as I don’t ever want my burden to ever halt any experiences for them, and with school events and sports events that I can go be part of rather than always seeing the video or being told, and just having them all know that their father will be able to join them for anything it may be.”
Tarjan needs a reliable vehicle to be a part of those activities and admits he has been stubborn by not asking people to help.
“My stubborn mind is always thinking I can do it on my own when I just have to admit finally that this one thing, and only this one thing, I have to ask for any help I can get,” Tarjan said. “If I am given any contribution towards my request, I want you to know how strongly you will affect the lives of myself and my three loved ones in so many ways and that we are all super grateful for your donation.”
The Lakeland and Canada is full of caring individuals and has always stepped up to help people in need in the past.
Sometimes, all you need to do is ask for help.
If you would like to help make Tarjan’s dream a reality, click here to donate.