
The desire to survive
Donation protected
Hi, my name is Marie Pontini, I have Multiple sclerosis, Hypermobile Ehlers-Danlos syndrome, Gastroparesis (&+..).
Unfortunately, my situation has gravely changed in the past few months and I have no option but to turn to your generosity.
I have been able to manage on a tight budget for the past year but things keep on getting worse, to a point that I can no longer afford to "hold my pride and dignity".
I'm single without family or support.
My insurance plan has changed and no longer covers my medication at 100%. The amount of the balance is too high, and I can only afford one of my drugs. 4 more prescriptions are essential but I can't buy them anymore.
My rent has increased to crazy amounts, barely allowing me to stay in my social housing apartment this year. The increase coming for 2025 is of 9%, and I honestly don't know how I'll pay for it. (It is social housing, but because the building has less than 5 years, they have no limit on the increase they can ask for, and I can't refuse it, or I must leave.)
In all honesty, I was glad this year that due to Gastroparesis, I was on feeding tube formula (elemental nutrition) and it was covered as a medication. Now that the formula is no longer covered, I can't afford groceries either.
Because I'm on a fix disability income from my past employer, I'm not eligible for welfare and all their subsidies. I can't make any extra income, or they cut it directly from my amount. I can't live with, or marry someone, or I lose my disability income.
I did apply to food banks and Christmas baskets but currently their waiting lists are full and closed to new requests.
I can no longer afford the aid transport (on which I 100% depend with my power wheelchair), to go to my frequent medical appointments.
I have asked for the support of my followers on my Instagram account.
I'm planning to start an account where I can receive tips from my feet fetshst fans in hope for a more stable help.
Over the last year, I sold most of my clothes and heels to cover my medications.
After consulting a disability financial advisor, I can't withdraw my employer's retirement plan. I need to wait another 15 years.
Like few of my friends with Multiple sclerosis who took that decision for the same reason, I consider accepting the Assistance to Death Program in the next 3-5 years, as I won't be able to afford to live.
I'm not here for a pity show, I love my life and I'm a very happy person.
But this is now my raw reality and I really hope that some of you can help. Absolutely anything is welcome and will make a difference.
My struggles with my health condition are not worth mentioning at this point. It is detailed more extensively after.
Thank you a million times for your help, support and kindness.
You can learn more about me and my journey on my Instagram page
☆☆☆☆☆☆☆☆
"Marie Pontini is a medalist wheelchair athlete, public personality and disability advocate who loves fashion.
She is a former chemical engineer, director and business owner.
Marie was diagnosed with an aggressive form of Multiple sclerosis (MS) in 2016. Within a few months, her condition degraded very quickly, leading to severe cognitive impairments and disabilities that forced the end of her career.
She then received her Hypermobile Ehlers-Danlos syndrome (hEDS) diagnosis in 2017 and went through a weight loss of 165lbs after the paralysis of her digestive system.
She uses a wheelchair since 2017.
So far, she has undergone over 31 surgeries under complete anesthesia.
In 2018, with unbearable neuropathic pain, Marie started bodybuilding as a way to empower herself over the situation.
"I fight the pain of my body with the pain of the gym, because that pain, I CHOSE it."
Bodybuilding also gives her a feeling of fulfillment, personal achievement and harmony with her body.
She started competing in 2019, and just won 2nd place at the prestigious Arnold Amateur USA competition in February 2024. She was the first Canadian female wheelchair competitor on an international stage, at the Arnold's Sports Festival in Cincinnati, Ohio.
Resiliency is in everything Marie does. Over the years, she has had to make adaptations to her training and nutrition as both of her conditions progress.
Her only way to train is by using a mind-muscle connection method without any external load.
Not only Marie has to constantly adjust to new constraints imposed by chronic illnesses, but her determination to live an empowering life has forced her to reconnect with her true inner-self to completely redefine her identity, thoughts and vision of life.
Through her Instagram page, she promotes physical activity for all, resiliency, personal acceptance and self-love.
She's hoping her path can be helpful for others to empower themselves through their own journey."
Organizer
Marie Pontini
Organizer
Montréal, QC