Donate to help me regain my independence

Patricia Kroot is organizing this fundraiser.

Donation protected

Hello everyone. My name is Patricia and I am raising funds so I can renovate my living space to allow me to remain in my home on my family farm as my physical strength declines due to a rare neuromuscular disorder.

My farm is my life. Always has been. It was my parents dream to own their own farm when they immigrated from the Netherlands in 1954 -

a dream made true through lots of hard work and sacrifices. A dream that I am now blessed to continue on with and pass down to my children.

The issue: I have oculopharyngeal-distal muscular dystrophy (OPDMD) which results in the weakening of all voluntary muscles including the facial muscles affecting eye lids, lip closure, chewing and swallowing. Your hands, wrists, arms, shoulders, neck, legs are all affected. It has progressed to the point that I am now permanently in a wheelchair and am having issues with safe transfers.

Because it is so rare, there is little to no research on this disorder nor any treatment options. That I totally understand because funds for research are limited and needs to be directed towards the populace. All that is known about OPDMD is that it's progressive - they don't know how far it will progress, just that it's progressive.

For 20 years I have been making my own adaptations here on the farm as my condition progressed, allowing me to continue maintaining the property and house. But now I need to do some major structural changes to my living environment to accommodate my physical decline, which will allow me to maintain my independence - something we all cherish and deserve.

I am still young in body, heart and soul, and have so much knowledge to share with my kids, especially on how to run and maintain the family farm - knowledge they are eager to learn. But for that to happen, I need to be here, not prematurely in a nursing home waiting for the care aides to help me out of bed, to the bathroom and back. Just thinking about that possible reality absolutely shatters my soul.

To date I’ve lived for just over sixty years on this beautiful planet of ours and have enjoyed the journey despite all it's ups and downs. Now as a kid I was always physically active, especially here on the farm but also in track and field, figure skating, skiing, and fitting in as many mountain hikes as I could. I continued this way of life throughout my time at university. Below is a picture of me on one of my many mountain adventures.

I managed to put myself through university, earning a bachelor’s degree in linguistics with a minor in psychology and a masters in speech/language pathology. I purchased the farm from my parents, giving them some much needed income, allowing them to retire. It's at this point that I started a family of my own as a single parent by choice via a clinic. A decision I celebrate daily as I look at my now amazing adult children. Below is a picture of them when they were little. So cute.

One of my specialties as a speech/language pathologist was working with children on the autism spectrum. This prepared me to help my two who are also on the high end of the spectrum. To date they have both successfully completed post secondary programs and are actively looking for work in their chosen fields. This is why I need continue living here - to support my kids as they move to become entirely independent and active members of society.

I won't lie, I am scared. I try to keep things light with humour but it's getting harder to keep that smile on my face. I know my kids are scared for me and that is the last thing I want them to feel. I am healthy - I just can't move around safely anymore nor functionally access things in my home.

My two are not in the house as I type this...they are out hauling in the hay from our fields. This is always a time of great celebration as the crops are harvested. A scene I pray I will be able to take part in for years to come.

Thank you for taking the time to read my story. Hugs to all.