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Dear Friends and Donors,
For Roxanne and I this Christmas has a special meaning. And not for a lot of good reasons. It was Christmas Day 2020 when Roxanne was finally admitted into the emergency at Kelowna General Hospital, after being turned away twice. That night she stopped breathing and had too be intubated . The next day they told us that she had ALS and did she want to go home with no medical aid, and she would pass away in 6 weeks. Or did she want to live a life with an incurable disease that has an average span of 2-3 years. However 10% make it to 10 years. That’s been our goal together 10 for 10 . She chose life, and so here we are one year later and she is courageously fighting on. She has cheated death twice and beaten the odds and is now in a position to extend her life, and be cared for by a 24x7 team of ALS trained nurses and doctors, in her new home at Fleetwood Care For Life. We just found out that she has been medically cleared for transfer to the only facility in all of BC that takes ALS patients with a tracheotomy and ventilator. While in hospital she was also treated for her endometrial cancer with a positive outcome.
Originally, we were told that the wait list was 1-3 years for her getting in to Fleetwood, and that she would have to wait in hospital. . But by some miracle of fate, they added 5 new private rooms in their facility to house 5 new ALS patients, and Roxanne is one of them,. She will be transferred from Surrey Memorial to Fleetwood on Thursday December 23rd, just in time for Christmas in her new home,.The other bit of good news is that the EYE GAZE machine, we have been telling you about, is now being given to Roxanne as a loaner by the province. This will open up a whole new world for Roxanne to communicate with everyone, including her nurses. She can can generate speech, text, e-mail, control her t.v., use her cell phone, and in general talk to visitors and family. By the way, visitors are encouraged at Fleetwood, as they strive for a home like environment. The only requirement will be to show your vaccine passport.
We are so grateful for all your prayers and generous contributions to her GO FUND ME Campaign. As you can see we have raised $5,710 towards our goal of $ 25,000.
All of that first money has been spent on Roxanne’s needs thus far, The next and final step for the campaign is to raise $27,600, which will go towards her room at Fleetwood. Given the nature of the private facility, the monthly room rate is $2,300 . If we raise $27,600 , that will pay for her room for a year. After those funds are raised we will close down the GoFund Me Campaign.
Let's Raise The Roof For Roxanne’s Room starting TODAY!
Please send this link out to all of your social media contacts with a simple one line note: I RAISED THE ROOF FOR ROXANNE AND I HOPE YOU WILL TOO.!
Copy and paste this on your Facebook page , twitter, instagram, and twitter. The link will automatically bring up Roxanne’s Go Fund Me site.
I RAISED THE ROOF FOR ROXANNE AND ALS AND I HOPE YOU WILL TOO! gf.me/u/zmv7wg.
From Dec. 19- Dec. 31st , you can help boost our mission to raise funds to pay for Roxanne’s Room at the only long term care facility in BC that will take an ALS patient.
We are aiming to raise $27,600 in 12 days. All we ask is that you spread the word.
God Bless and Happy Holidays!
"Once in a while you get shown the light, in the strangest of places if you look it right" – Robert Hunter
Amyotrophic lateral sclerosis (ALS), also know as Lou Gherigs Disease, is a progressive neurodegenerative disorder. In patients with ALS the gradual death of nerve cells in the brain and spinal cord that control muscles can result in the progressive weakening of muscles throughout the body. Roxanne has begun to experience many of these symptoms.
In addition to not being able to stand, she is either in bed or a wheelchair for extended periods of time. She has lost 45 pounds and is She is being fed through a feeding tube in her stomach. She cannot speak and is breathing through a tracheotomy and a ventilator. She requires 24x7 care.
ALS is still a death sentence for most patients, typically within three to five years of diagnosis.
There are also over 10% that have lived for 10 years after diagnosis. I told Roxanne I wanted her to be at my 90th birthday party and she said “ Can I bring a date”. She has not lost her sense of humour, nor her will to live.
She is a survivor, having been a teenaged single mom who raised her son, Orion, on her own. But the ultimate test of her willingness to survive came on Christmas Day eve of last year, when the emergency department at Kelowna General finally admitted her, after two other attempts had failed.
That night she stopped breathing and would have gone into a coma , if they had not taken her to ICU, where she was revived by a breathing machine. In that moment and for the days that followed life became a blurry nightmare for her. The ICU Doctor broke the news that he was certain she had a serious incurable disease, called ALS, and that she would die within 2-5 years.
Nobody deserves to hear they are going to die based on statistics, however there are signs that with the proper care and support from a team of physiotherapists , speech pathologists , and occupational therapists, a patient can hopefully have a quality of life. In Roxanne;’s case maybe she can start to walk again with a walker, use a wheelchair to get around by herself, and hopefully as technology advances, her speech will come from an "Eye Gaze" computer that is being loaned to her through the ALS Clinic.
One of the reasons I made a decision to move Roxanne and myself to Vancouver was to be closer to the ALS Clinic for treatment. This has resulted in putting her into private care because of her special needs.
This obviously is not sustainable based on our limited financial resources. And so after over 30 years of raising millions for others at hospitals, universities, and non profits, I now find myself humbly asking others for help and financial support for Roxanne.
This was not the life Roxanne and I intended or planned for. We were looking forward to enjoying our sunset years. Roxanne has suffered a great deal since last February, when she started to develop symptoms and her cries for help were ignored by a broken health care system in the Okanagan, too few specialists with waiting lists of 8 months, and a GP we trusted , who misdiagnosed her from the very beginning ,and was reluctant to refer her to a neurologist.
Instead he treated her as a mental patient, and gave her numerous drugs that sedated her and left her with stroke like conditions, that may have even triggered further damage to an ALS body that was deteriorating.
Her muscles became so weak she could no longer walk from the couch to the bathroom without the aid of a walker, she could no longer stand at the bathroom sink and brush her teeth, and she could no longer sleep in our bed, because lying on her back was too painful.
We are praying for minor miracles at this point, and I myself am digging deep into new hopeful treatments in the U.S. that are not available in Canada. But I need time , and it’s time we are running up against.
This ALS journey for Roxanne has been painful and continues to test her resilience and faith. With your help, just maybe we can at least give her a fighting chance.
Thank you from the bottom of our hearts,