Supporting Jason Schmidt & Family through ALS
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*Jacqueline Frei and Jaime Schmidt are organizing this fundraiser on behalf of their dearly loved brother, Jason Schmidt, and his family*
So many of you have reached out to ask what can be done to support Jason and his family and have expressed the desire to contribute to his ongoing care. Our goal with this fundraiser is to ensure that Jason can live the best life possible with ALS. We want to ensure that he can remain at home with his beautiful family making memories while he can, without the added stress of the financial burden the disease is creating.
Jason's Story - A Devastating Diagnosis:
A year ago we received the utterly devastating news that Jason’s deteriorating speech, muscle weakness and twitching were due to ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease. Not only was Jason handed one of the worst diagnoses imaginable, he has the rarer and more aggressive Bulbar onset form of ALS, which first affects the muscles involved in breathing, speaking and swallowing. People with Bulbar onset ALS experience a faster decline and shorter survival. Sadly, the prognosis for ALS is grim, and there is no cure.
As you can imagine, this past year has been incredibly difficult for Jason and his family. Living with ALS means making constant adaptations. Simple tasks become progressively more challenging and eventually become impossible. In a very short time, Jason has lost the ability to talk, hug his girls, drive a vehicle, text on a phone, and use a computer keyboard. Gone is his ability to walk unassisted, sleep comfortably, dress and feed himself, shower independently, roll over in bed and scratch an itch. There is no coming back from these losses. Eventually, ALS will take away Jason’s ability to breathe.
Besides the devastating physical losses, the emotional trauma is equally as extreme. The shattered dreams for the future… of continuing to build his business, then retiring to the lake. The dreams of family vacations, growing old with his wife, watching the girls grow up, seeing them graduate, walking them down the aisle, and dreams of becoming a grandfather - all taken away.
Since June, Jason has been receiving his nutrition through a feeding port. His primary way to communicate is by using a computer with speech-generating eye gaze technology. He uses a walker and wheelchair. Inside he is still the same person - still a wonderful father, a loving husband, a son, a brother and a friend. We are beyond grateful that his personality and cognitive skills remain unchanged. He still loves a good prank and teasing his girls. His humour, smiles and laughter are inspirational and help to keep the rest of us going.
The impact of ALS on family caregivers is also huge. Emotional stress, depression, muscle injuries, lack of sleep and chronic fatigue are common and can lead to chronic health issues. Providing care can be challenging especially while juggling daily living activities and providing support for the rest of the family. There is sadness and grieving for all the losses, but also laughter and smiles, and trying to find moments of joy amongst the challenges and frustrations of living with the relentless progression of this cruel disease. Staying connected to a wide circle of family and friends is so important to maintaining our mental health.
We would like to thank all of you who have reached out to offer support and understanding.
The family is grateful for the texts, meals, help with household tasks, shopping and errands, driving the girls, yard work, shovelling snow, donations and many other thoughtful acts. We also want to thank everyone who assisted with the winding down of the business and cleaning up of the shop. Prayers and well wishes are also incredibly helpful and well-received as they bravely face this journey ahead.
In addition to Jason’s physical and emotional losses, the worries about his family’s financial security are very real. Jason was self-employed and ALS forced him to hastily sell the business he loves, as he can no longer physically work to support his family. His wife Bobbie has taken a leave from her job to provide round-the-clock assistance. The family’s income has been severely reduced and their living expenses significantly increased due to the costs associated with equipment and resources required to ensure adequate care, comfort and safety for Jason. We’d like to help offset some of these costs and remove some of this stress from the family.
Anyone that knows Jason knows how stubborn he is, and also how proud and generous he is. He is not someone that would ever ask for help, yet would be the first person to help anyone else in need. So now it’s our turn to give back.
If you are in a position to help Jason and his family, please consider donating and sharing Jason’s story with others. Awareness of ALS is critical, as research continues to be significantly underfunded worldwide, with little progress made in finding a cure, and treatment options.
How will the funds be used?
While the ALS society and our Health care system in Alberta have provided the basic equipment needed, there are many things not covered. All funds raised will go directly towards Jason’s health care, home care, equipment and home renovation requirements. Anything over and above what is needed for Jason’s care will be allocated to an education fund for Peyton and Riveigh. Equipment purchased will be paid forward to other ALS victims.
Transportation and Mobility Aids – We want Jason to be able to continue some of the activities he enjoys so much. Going to the lake, watching the girls play sports, attending hockey games, and visiting family and friends. Some new and innovative technologies can provide greater freedom of movement and functionality, that is not yet available through support agencies. Upgrading from a basic wheelchair to a power-assisted wheelchair will allow more comfort and independence, but with that comes a need for a wheelchair-accessible van, lifts, ramps and other specialized equipment.
Private Home-Care Support – In addition to the full-time care provided by Bobbie, private home-care support has been arranged for 6 hours a day, a portion of which is provided by support agencies. This need is expected to increase substantially in the coming months, at a cost of $35/hr.
Registered massage therapists and physiotherapists - ALS causes muscle cramping and tightening, and paramedical practitioners such as registered massage therapists and physiotherapists can help ease symptoms and maintain mobility as long as possible.
Home Renovations – Jason and his family will be staying in their two-storey home in Cranston, Calgary. The cost of retrofitting their home with wheelchair lifts and accessible renovations will be extensive.
Specialized Bed and Equipment - A basic hospital bed is working for now but more advanced options are available that may be needed in the future to maintain blood flow to extremities and decompressing tissue, preventing new complications associated with immobility such as pressure ulcers, thrombosis, and respiratory complications. An example is the Pro-bed https://www.pro-bed.com/
More about Jason and his diagnosis:
Jason is the proud father of two beautiful girls, Peyton (15) and Riveigh (12) and a loving husband to his wife of 17 years, Bobbie. Before diagnosis, Jason was extremely active, playing golf several times a week, coaching his daughters, playing hockey, and running a growing business designing, installing and maintaining Geothermal heating and cooling systems.
Jason’s symptoms first started in the summer of 2021, with slurred speech. By fall he was also experiencing extreme fatigue and cold-like symptoms that wouldn’t go away. After months of doctor and specialist visits, treatments with antibiotics and steroids, and test after test with no answers, he was diagnosed with ALS in January 2022.
Jason has demonstrated great fortitude and perseverance in the face of the suffering caused by this cruel and unrelenting disease. Despite the disabilities and discomfort, Jason continues to live life with passion and purpose. He has maintained his focus on quality time with family and friends and ensuring the financial future of his family. He has also done his best to serve his former customers by keeping the business going until it could be sold and continuing to provide transition assistance to the new owner.
On behalf of the Schmidt family, we thank you for your continued love and support.
Note- When donating, there is a "Tip GoFundMe Services" section which defaults to 15%. This can be manually changed to 0 (or whatever you choose), it is not required.
If you would prefer to donate to the family directly, please contact Jacqueline via the GoFundMe link, or Jacqueline Frei on Facebook Messenger, so that arrangements can be made.
Please spread the word by sharing the link to this fundraiser. Crowdfunding works when many people make contributions, big and small.
More about ALS:
Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease is a progressive neurodegenerative disease causing muscle weakness, paralysis, and respiratory system failure. This disease attacks cells in both the brain and spinal cord that are necessary to the body’s functional mobility. Symptoms often begin as mild twitching and cramping, weakness in the arms and legs, and difficulties swallowing or speaking. As ALS progresses, individuals experience an increasing inability to move any part of the body and often become completely dependent on a feeding tube for nutrition. There is no cure for ALS. The available treatments have only been shown to slow the progression and extend survival by a few months.
In Canada, about 3,000 people are living with ALS and about 1,000 die each year. ALS is a complex disorder and research has been greatly underfunded. There are, however, many new treatments being researched, that have the potential to slow the progression or manage symptoms. Sadly, space in clinical trials is very limited and less than 10% of ALS patients are eligible to participate. Bulbar onset patients are frequently excluded from trials due to the shortened life expectancy.
Fundraising team: Team Schmidt (2)
Jacqueline Frei
Organizer
Calgary, AB
Jason Schmidt
Beneficiary
Jaime Schmidt
Team member