Rheumatoid Arthritis (RA), a chronic inflammatory disease, is something that strikes people late in life – or so I thought. The average age of diagnosis is about 60 years old. It can affect young people, but that’s not the norm. Today Janelle is 46 years old and she is one in an estimated 1 to 2 million Americans who suffer the effects of RA.
Janelle was diagnosed with Juvenile Rheumatoid Arthritis (JRA) when she was 9 years old. For more than 3 decades, Janelle has endured in excess of 15 surgeries, roughly 7 of which were joint replacement surgeries, including shoulder, hips, elbows and knees. This extreme treatment is designed to help her do the simplest of tasks, such as walking to her car each day for work – a task that sometimes is almost impossible for her.
Janelle’s scars and the damage done to her body by JRA may be visible, but her most prominent trait is her upbeat positive personality. Janelle is the strongest and bravest person I know. Even though she suffers every second of the day and has gone through a lifetime of traumatic pain, she never lets it bring her down – at least not in front of others.
Up until a week before her 15th Birthday, Janelle spent most of her teen years in a wheelchair. At that time she underwent 3 surgeries in 2 weeks on both knees and a hip with the hope freeing her from her wheelchair. No matter how many surgeries it took, Janelle would endure the pain if it meant she could walk again – if it meant freedom from that wheelchair. It took her 3 1/2 months to regain her strength and learn to walk again. Nine years after JRA put Janelle into a wheelchair, she was able to walk up and receive her high school diploma. Not only a major victory for her, but a dream come true.
This was just one of the many challenges she would face and overcome. In 2005 Janelle's mother Sonja was diagnosed with Alzheimer's disease. Up until that time, Sonja was Janelle’s rock – she was there for every surgery and recovery Janelle went through. Despite Janelle’s own physical limitations, she lived with her mother, and with great love and patience took amazing care of her. It devastated her when in 2011 Sonja's condition deteriorated to the point that Janelle could no longer care for her on her own. Painstakingly she toured assisted living centers until she found what she felt was the best fit for her mother. Janelle was now Sonja’s rock, visiting her daily.
In 2012 Janelle’s femur bone fractured beneath the stem of her hip implant requiring surgery. At a follow up appointment her hip came out of joint. The hospital team was able to reset it and she was sent to The Lodge, a rehab center in Grand Rapids, for recovery. She was almost set to go home when during therapy they noticed her femur had re-broken requiring additional surgery.
While waiting for surgery, her hip came out of joint for the second time, necessitating yet another surgery. Unfortunately the original hip implant, consisting of a smaller stem, ball, liner and socket, was no longer manufactured for use in hip implants and the FDA denied the remanufacturing of the necessary parts to reconstruct Janelle’s hip. Again Janelle found herself at The Lodge, confined to a wheelchair – uncertain if she would ever walk again. It took 5 months of fighting the FDA before they granted a hardship exception and approved the remanufacturing of the parts needed to repair Janelle’s hip.
Janelle spent six months at the rehab center. During that time, the house she rented was sold, leaving her homeless. Though this would be more than you and I could take, life wasn’t through challenging Janelle.
One of Janelle’s knee implants required replacement surgery in 2013. During recovery, on June 19, 2013, Janelle's life was irreversibly changed when news came that her twin sister Jill's life had been cut short in a tragic motorcycle accident. Less than a year later, April 5, 2014, Alzheimer's took her beloved mother Sonja. In August of that same year she was struck with the life-threatening bacterium Clostridium difficile (C. diff) that took many months and multiple hospital stays to recover from.
Throughout her life Janelle has surpassed everyone’s expectations and overcome many challenges and tragedies. Janelle has worked at the same company for 18 years, and today, thanks in part to Habitat for Humanity, lives independently in her own home. Janelle bought her Habitat home in November 2014 after being homeless since April 2012. Inexpensive housing was scarce and finding something she could afford that also accommodated her physical limitations was proving to be impossible. She knew that if she could get a house for less than what she had paid for rent, she could own her own home. The overwhelming part came when she had to complete 300 hours of sweat equity working on the construction of her home and other homes. With her physical limitations, this would be impossible – but she made it happen. Habitat allowed her to complete her sweat equity hours helping out in the ReStore and with administrative tasks. It takes sacrifices to get things done and through hard work Janelle helped build her home.
Habitat is a great resource for individuals and families – not only because they teach the value of owning a house – but they also help people like Janelle overcome the challenges of their past. When you are blessed you should bless others in return, and Janelle does this. Giving back, she continues to volunteer with Habitat for Humanity helping Habitat build more homes in our community.
While Janelle is happy to simply have a roof over her head, my goal is to ensure that she can safely get in and out of her home year round. Living in a snowy state brings many challenges to someone with limited mobility; challenges Janelle faces each winter. If Janelle falls, she is unable to stand up and must wait until help arrives. She is unable to shovel her own driveway and has no way to get to and from her car safely let alone brush the snow off it. How will she go to work, volunteer her time, get to appointments or buy groceries if she has a slip and fall injury, or worse, has an injury that puts her back into a wheelchair robbing her hard fought independence? A garage would solve a lot of problems, but on such a small income she has no way to put one up. She has no way to pay for someone to shovel and plow either and needs someone to help her in and out each time it snows. She has made every attempt to be as independent as possible and does not want to be a burden to anyone, however even she recognizes that sometimes she needs to reach out for help.
A garage is an accessibility necessity for Janelle. An attached garage would cost $35,000 and seems out of reach. Instead we are trying to raise the estimated $15,000 it will take to build Janelle a non-attached garage. Please open your hearts and lend a hand by donating whatever you can (even if it's only $1) to help build a garage for Janelle. Trust me when I say she would do it for you and will find a way to pay your generosity forward.
- Tracy Ekola
- Jenna Odegard
- Mike & Peggy Krook
Organizer and beneficiary
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