Let me introduce myself. I’m Alison Bailey (Lee calls me Bubbles) and I’ve known Lee Ederer for almost 30 years. Our friendship blossomed while working side by side in the Asia Pacific Management Cooperative Program at Capilano College back in the 1990s. We clicked right away; we laughed at everything…we just understood each other. Like with any friendship, we’ve weaved in and out of each other’s lives over the years –always running parallel and incognito at times. What Will Be, Will Be In September 2024, Lee embarked on the most challenging journey of her life. She was diagnosed with ALS, Amyotrophic Lateral Sclerosis (aka Lou Gehrig’s disease), a ruthless, unrelenting disease for which there is no cure. Lee’s diagnosis came after a lengthy assessment process (1 ½ years of disease elimination) with excruciatingly painful tests along the way. Yes, she has often asked herself, “Why me?” but it was always accompanied by, “Why not me?”. That’s Lee. In simple terms, ALS is a fatal neurodegenerative disease that gradually causes patients to lose the ability to move, speak, swallow and breathe. ALS treatment includes therapies and medications to manage the symptoms and slow the progress of the disease. Currently, there is no cure and the average life expectancy ranges from 2-5 years. In other words, Lee doesn’t know how much time she has left - but she does know that she’s hell-bent on staying in her own home close to family and friends with the help of her incredibly compassionate ALS support gurus. Fact: About 3000 Canadians are living with ALS – and Lee is one of only 400 British Columbians diagnosed with this life-altering disease. As Lee would say sarcastically, “Cue the applause!” Lee’s Reality Lee is calmly navigating stage 2 of 4 and has lost the ability to walk and stand and relies on an electric wheelchair and stair lift; she also is experiencing muscle weakness in her arms and hands making it very difficult to pick things up, get dressed, slice food, the list goes on. In Lee’s own words, “her world has become very small making little things very big, both physically and mentally.” Sadly, as she moves into stages 3 & 4, she will lose the ability talk, eat, swallow and eventually breathe. Just seems unbearable and so unfair. Lee’s matter-of-fact approach is serving her well but don’t be fooled by her tough exterior, she’s had her moments and has shed many a tear. She’s human after all. In July last year, Lee was blessed with the birth of her first grandchild - a precious little boy. More incentive to retrofit her home with an accessible wet room; add a stairlift at the front entryway and build a wheelchair ramp to name a few. As you can imagine, this has come at quite a substantial out-of-pocket cost. Life as Lee knew it, has fizzled and sputtered since her diagnosis. Sadness creeps in especially when she thinks about how this illness has taken over so many parts of her life. It troubles her that she has to rely on others to do what used to be the simplest of things. All of her retirement plans have been crushed and replaced with everyday obstacles such as getting dressed and personal care. It’s become clear that her sadness is coming from loss. I often ask myself, Why Lee? Why Fill Lee’s ALS Bucket? ALS takes away everything, well almost everything. The one thing Lee desperately wants is to stay in her family home. The ALS Society of BC and Vancouver Coastal Health’s Palliative and Supportive Care Program have generously provided (and continue to provide) most of the adaptive equipment, furniture and support staff to allow her to remain in her home giving her a “sense of independence.” But ultimately, Lee fears she won’t be able to afford to make mortgage payments in the coming months as her needs become more acute and she transitions from long-term disability to pension income. I’ve coined a phrase that I think gives you some perspective on this disease: ALS - “Anxiously Living in Solitude”. Lee needs our help. She’s on a bus she can’t get off. Each stop is very personal; between stops, doctors help navigate the process guiding her along with their expertise and knowledge. How Do We Say Thank You? We truly appreciate your support. We send you nothing but love and gratitude. Just know… for Lee to ask for financial assistance in such a public way, indicates how desperate she is. She’s one proud lady and has led a private life…this plea is gut-wrenching for her. Keep in mind, this is only a glimpse into Lee’s struggles and hurdles…as of today. She’s a fighter. She’s persistent yet fair. She’s smart and incredibly witty. She’s beautiful. And best of all, she’s my good friend. Let’s put her mind at ease and lessen the financial burden. Let’s give her strength where it doesn’t exist. Let’s rally around our friend and lighten her journey. We’ve sheepishly set a goal of $40,000. We know it’s a mighty big ask but we have to start somewhere. All of the money raised will directly offset the costs of living with ALS thus far and inevitably moving forward. This is our promise to you. Please SHARE the heck out of this!
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