Marie-Josée's life fund
Donation protected
I recently met this wonderful little family through my brother, who works with Marie-Josée’s fiancé. They are so sweet, and their story broke my heart. I knew I had to do something to try to help.
Marie-Josée has a very rare and genetic terminal condition called Action myoclonus renal failure syndrome. Her symptoms began at 23 years of age, and she is now 30. This horrible and slow progressing disease can take someone’s life in about 10 years. Marie-Josée watched her mother slowly die from it when she was only 9, as well as her uncle, her aunt and her recently passed cousin.
It is a progressive epilepsy disorder which begins with tremors and jerks and progresses into seizures, which become unresponsive to anti-epileptic drugs as the disease progresses. Marie-Josée is now bedridden due to severe action myoclonus (muscular jerking). Her speech is also affected and she speaks very slowly and stutters. She can only get around in a wheelchair with help. Attendants come to her home to help her with everyday tasks such as eating and bathing. Her sweet 4-year-old daughter stays at home with her and helps as best she can.
Her fiancé is a contractor and works long hours to try to make ends meet. He does not get paid unless he is on the job and cannot take time off. He does his best to take care of the house and of his family. They need several installations to help Marie-Josée get around which they cannot afford. They need to renovate the bathroom ($10 000), they need a lift kit to get her in and out of the van ($8000), medication is around $240/month, not to mention other equipment they struggled to purchase with minimal government grants.
The main reason I wanted to set this up for them is because they are completely unable to obtain any kind of life insurance as no company will accept to cover for a terminal illness. So funds will be needed for funeral expenses as well.
Marie-Josée and Emmanuel have been engaged 9 years, unable to afford a wedding thus far. I have high hopes that this fundraiser will finally make it possible for them against all odds.
I need to mention that throughout all of these trials, Marie-Josée has remained very positive. She is so kind hearted and is always in good spirits despite everything. She truly is an inspiration.
Thank you for taking the time to read this. Any little bit will help, and will bring a spark of hope to this brave family.
Marie-Josée has a very rare and genetic terminal condition called Action myoclonus renal failure syndrome. Her symptoms began at 23 years of age, and she is now 30. This horrible and slow progressing disease can take someone’s life in about 10 years. Marie-Josée watched her mother slowly die from it when she was only 9, as well as her uncle, her aunt and her recently passed cousin.
It is a progressive epilepsy disorder which begins with tremors and jerks and progresses into seizures, which become unresponsive to anti-epileptic drugs as the disease progresses. Marie-Josée is now bedridden due to severe action myoclonus (muscular jerking). Her speech is also affected and she speaks very slowly and stutters. She can only get around in a wheelchair with help. Attendants come to her home to help her with everyday tasks such as eating and bathing. Her sweet 4-year-old daughter stays at home with her and helps as best she can.
Her fiancé is a contractor and works long hours to try to make ends meet. He does not get paid unless he is on the job and cannot take time off. He does his best to take care of the house and of his family. They need several installations to help Marie-Josée get around which they cannot afford. They need to renovate the bathroom ($10 000), they need a lift kit to get her in and out of the van ($8000), medication is around $240/month, not to mention other equipment they struggled to purchase with minimal government grants.
The main reason I wanted to set this up for them is because they are completely unable to obtain any kind of life insurance as no company will accept to cover for a terminal illness. So funds will be needed for funeral expenses as well.
Marie-Josée and Emmanuel have been engaged 9 years, unable to afford a wedding thus far. I have high hopes that this fundraiser will finally make it possible for them against all odds.
I need to mention that throughout all of these trials, Marie-Josée has remained very positive. She is so kind hearted and is always in good spirits despite everything. She truly is an inspiration.
Thank you for taking the time to read this. Any little bit will help, and will bring a spark of hope to this brave family.
Organizer
Sandrine La Haye
Organizer
Rockland, ON