Help François Quesnel in his battle with Scleroderma
Donazione protetta
What is Scleroderma?
Scleroderma is a rare, progressive autoimmune disease with no cure that occurs when the immune system mistakenly attacks its own body. When this happens, the body’s response is to produce excessive amounts of collagen, causing scar tissue (also known as fibrosis.) This scar tissue builds up, basically hardening the organs and any other part of the body that is being attacked until they eventually shut down and stop functioning. This is why Scleroderma is one of the most dangerous, and often fatal, autoimmune diseases a person can get.
Quick History
Frank and Emilie have been together for over 20 years. They got married in 2012 and had their beautiful daughter shortly after. It was the beginning of the perfect story….until Frank’s health started declining. Frank was diagnosed with Systemic Scleroderma in 2019 and that’s when times got rough.
The progression of his disease
Scleroderma is a hard disease to diagnose. Most often, you can only diagnose it once it has moved to the organs. In Frank’s case, his lungs were the first affected with fibrosis as well as his fingers.
The gastrointestinal track was the next. After having the diagnosis, he start seeing a gastroenterologist who was able to dilate the esophagus in order for him to be able to swallow. After the first few visits, he was diagnosed with Barret Esophagus which led to Esophageal Cancer. After having his esophagus dilated a few times to be able to swallow, esophageal cancer was detected.
February 2023 – Frank was treated at the McGill University Health Centre by their thoracic surgeon to remove the cancer…and after that, Scleroderma decided to strike hard…
March 2023 – Frank was admitted to the Hospital for severe intestinal blockage and critical weight loss which almost cost him his life. Two months later, he was able to return home.
August 2023 - the ulcers on his fingers turned black. After a month of back and forth with specialists, he was transferred to the Sacré-Coeur Hospital in Montreal where he had 8 fingers amputated and many treatments to try to slow the progression including weeks of sessions in the hyperbaric chamber.
March 2024 - A few months after his return home, he was readmitted to the Hospital and it was determined that his esophagus and stomach weren’t contracting anymore and his body was incapable of absorbing nutrients. They tried many options, one of which was tube feeding which landing him in the Intensive Care Unit, intubated. It was then determined that the only option to feed him was with TPN (Total Parenteral Nutrition). In the Outaouais region, this is not something that can be administered at home under Frank’s circumstances since he’s not autonomous.
After many attempts and meetings, and a long 7 months stay in the hospital, the CHUM (Centre hospitalier de l’Université de Montréal) finally agreed to let Frank come home under the care of Emilie which had to undergo a 2 month specialized training through the CHUM to be able to administer, maintain and be in charge of his home TPN protocol.
October 2024 - Frank is finally home….is he top shape and ready to roll? Absolutely not. He’s still missing 8 fingers, his organs aren’t working properly or some at all. TPN is very toxic for the liver which is already showing signs of dysfunction since he now has esophageal varices which are caused by liver issues.
Although we have no idea what the next few months hold, Frank is a fighter and is not abandoning this fight!
What this money will go towards:
- Medication and medical supply: The cost of Frank’s medication and medical supply is outrageous. They aren’t the typical everyday medication. Some of these drugs aren’t covered by insurances because Scleroderma is rare and acts completely different from one body to the next. Therefore, some of these very costly medications are still considered experimental for his condition and consequently not covered.
- Medical trip: Unfortunately, we don’t have the luxury of having the best specialized care in our region such as Rheumatologist, Scleroderma specialists, Pulmonary Specialist to name a few. In the last year alone, Emilie traveled over 30 times to Montreal for medical purposes and Frank will need to have many follow-up appointments and treatments away from home.
- Lifestyle: Enjoying precious moments at home with your family comes at a cost. We’re not talking about family trips and outings, we are referring to adjustments to the home to accommodate Frank’s needs, and new debilitating mobility and allow him to spend time with his family.
Frank can’t do much on his own anymore and will never work again. If you know Emilie, you know that she’s the hardest worker there is. She worked hard all her life to get a great career which she achieved. She has mad skills, she does it all. Still working full time, let’s not forget a full-time mom, and now she is a full-time nurse to her still very young husband.
Please help them relieve a little bit of the financial stress that this nasty disease is causing on their family so they can concentrate all the little energy they have left on Frank and his family’s health. Thanks in advance.
Organizzatore e beneficiario
Cathy Dunphy
Organizzatore
Gatineau, QC
Emilie Bertrand
Beneficiario