Hi! My name is Jamie and I am starting this fundraiser for my mom, Leigh Ann, who was recently diagnosed with ALS.

Amyotrophic Lateral Sclerosis (ALS)

ALS, also known as Lou Gehrig’s Disease, is a disease that gradually paralyzes people. When ALS strikes, the brain is no longer able to communicate with the muscles of the body. Ultimately, the person suffering from ALS will lose their ability to walk, talk, eat, swallow and eventually breathe. The speed at which ALS progresses varies per person, but the average life expectancy is 2 to 5 years after the onset of symptoms. At this time, there is no effective treatment and no known cure. (Source: ALS Canada).

Leigh Ann’s Journey to a Devastating Diagnosis

In August of 2021, Leigh Ann started experiencing severe back pain, which she attributed to a couple of days spent bent over in the garden. Soon after, she started experiencing double vision. Still, she felt a pinched nerve must be the culprit. Within the week, a friend insisted on taking her to the ER, where she was told she had likely had a mini-stroke. She left with a walker and scheduled physiotherapy appointments.

Unfortunately, as time went on, Leigh Ann’s muscles were getting weaker and weaker (instead of stronger, as the doctor’s had predicted). No longer able to walk unassisted, she was heartbroken that she was no longer able to return to work as an EA (as she had done for nearly 30 years prior). Her husband and soulmate, Ray, also had to stop working, in order to become her primary caregiver.

There are many other diseases that mimic the symptoms of ALS. Each of these have to be ruled out, before an ALS diagnosis is given. In Leigh Ann’s case, it took longer than average to get any answers. Two years of testing, waiting, examinations and assumptions. Two years of visiting doctor after doctor, and clinic after clinic…only to come back home without answers. In July 2023, Leigh Ann finally received the diagnosis, a devastating diagnosis, of ALS.

Living with ALS means that simple tasks become progressively more challenging and eventually become impossible. In a very short time, Leigh Ann has gone from pushing wheelchairs, to being confined to one. Anyone who knows Leigh Ann, knows how truly devastating this disease has been for a lady who was always “on the go.”

How Will the Funds Be Spent?

If you know Leigh Ann personally, you know that she NEVER asks for help. She is a very proud and determined woman, who has always had an incredible way of taking care of things herself. That is why we are putting this fundraiser together on her behalf.

Because there is no cure for ALS, the only thing we can do is to take steps to improve Leigh Ann’s quality of life at home as much as possible. Although our health care system as well as the ALS Society of Canada have provided an incredible amount of support and equipment, there are still many things that are not covered. All funds raised will go directly towards Leigh Ann’s health care, equipment and home renovations that will make her day-to-day life more pleasant.

First and foremost, we need to get a wheelchair accessible deck and ramp added to the front of the house (not only for medical appointments and days of fresh air, but also in case of emergency). The cost of this is over $7000, and although there are some grants/funding available, the waitlists are up to 3 years long! Should we get lucky and secure funding in time, the money raised will be used to help Leigh Ann re-gain some of her independence. For example, by installing Amazon Alexa and accessories, she will be able to control lights, music and phone calls with just her voice. Any remaining funds will be used to make other home accommodations (e.g., widening doorways), to pay for medications that aren’t covered, and to set up a new bigger and brighter room for Leigh Ann, so that she can spend her days making memories with her family and close friends.

Our goal with this fundraiser is to ensure that Leigh Ann can live the best life possible with ALS. We want to make sure that she can stay comfortably at home, for as long as possible.