Single mother fighting Ehlers-Danlos Syndrome

For: Maggie Mohseni
Coquitlam, BC, Canada
Organizer: Maggie Mohseni
Single mother fighting Ehlers-Danlos Syndrome (Maggie Mohseni)
$1,737
of $3,000 goal.
Raised by 29 donors
57% Complete

The Story

My name is Maggie and I am 37 years old.

There years ago I was diagnosed with Ehlers-Danlos Syndrome. EDS is a progressive, degenerative connective tissue disease. That means that my body produces defective collagen, which is essentially the glue that holds my body together. In my case, all of my joints are hypermobile and failing. It causes a massive range of symptoms, the largest being very easy dislocations and widespread pain throughout my joints and muscles.

EDS is rare and there is no cure.

A big problem that I have with EDS is that it's an invisible disease. From the outside, I look fine, but my body is literally falling apart. The greatest challenge I have related to EDS is that it's progressive. That means that over time I will get worse and need more assistive equipment until I end up in a wheelchair.

I am a single mother to a sweet 8 year old boy named Preston. He has Autism, Sensory Processing Disorder, Auditory Processing Disorder, Scoliosis, Celiacs as well as EDS. He has many therapies from speech therapy, occupational therapy and neurofeedback. He is my life, my love and the reason I need to keep going and not let EDS take my body from me.

I am doing my best to provide for him. I am on disability since I can't work in my condition. I have no support system of any kind, no child support payments and so I am need of your help.

The medications and vitamins that help me stabalize cost over 200 dollars every month (which are not covered by medical), and barely keep the pain down. I cannot afford the ones that would really help me. The cost of living from day to day has become so overwhelming that trying to save any is impossible.

I have been trying to manage without a car for more than 5 years now. Taking my son to therapy, doctors and hospital appointments. Transit takes a huge toll on my son and I, from the commutes to the physical aspect. All of this is wearing me down fast and I am losing my mobility.

Please help me raise enough money for a safe, reliable, used car that I can use to take care of us.

A donation of any amount is appreciated. And please share my fundraiser.

Thank you for taking time to get to know a bit about me.

Fundraiser Updates

Posted on December 9, 2016

Posted on December 9, 2016

Wow it's been a year since my last update!

Well let's see.. Preston is now in Grade two. He is doing really amazing but struggling with writing which is ok and I'm working with him on it. He's a very smart little boy and has such good memory.

In regards to my health.. well I'm not as well as I was last year, but that is to be expected I guess.

This month alone we have 4 specialist appointments between us. Yay lol.. at least we have these wonderful doctors that keep up with us.

My pain is at an all time high and I think it's because of the cold and snow. I heard tonight there will be a snow storm. Brrr....

I now have finger ring splints for all my fingers to help support them when they have bad days. They keep my fingers from folding all the way backwards. And I also got myself a pink fold up cane! It was pretty exciting because I need it but also heartbreaking ..because I need it. I mean I'm only 35.. I don't want to be having to use it :(

This spring I tried aqua therapy with the 65+ year old folks at the local rec centre and I couldn't even manage that lol.. oh man! They were in shock too!

Preston turned 7 in August. We invited some friends to meet us at a local park and wading pool. He had a really fun day playing with friends.

Today we put up our tree and I'm officially done. Tomorrow I won't be able to move a muscle.. the things we do to make our children happy :) his smile was priceless and he had so much fun putting up all the little decorations he's made over the years.

I have had so many wonderful supporters and just want to thank you all for being so generous.

I wish you all a Merry Christmas, Happy Holidays and a Happy New Year

Please keep us in your prayers..

Love Maggie & Preston

Posted on November 28, 2015

Posted on November 28, 2015

This year has been going by so quickly!

I thought I should update everyone on how we are doing.

Preston is now in grade one and doing amazing! He is reading so well and doing great at math! Homeschooling is fun but also a lot of work. He loves it and I am blessed with such a great student :)

The weather is now starting to get much much colder and I am definitely feeling it in my joints.

I am no longer going in for the injections since they said that I have plateaued and there is no point so I was discharged. They have now referred me over to BC Women's Hospital for the Complex Chronic Disease Program. I am now on the long wait list to see how they can help me. I am also going to St Paul's Hospital to the Elder Care Department for treatment.

Preston has told me that he would like to set up a site and sell his drawings and paintings. Until I figure out how to make such a thing, if anyone donates $20+ I can send them one :) If you are close by and can pick up great but if not we can mail to you.

It has been nearly a year now and I am hoping, wishing and praying that this year before 2016 comes we can get this car! :)

Thank you for all your support and love!

Maggie & Preston

Posted on June 19, 2015

Posted on June 19, 2015

Just wanted to update everyone on our progress over the past month.

My son is nearly done his first year in school and I couldn't be more proud of my little angel!

We have both been going to many therapy appointments and .

I have officially started the trigger point injections which are so not fun but I am praying that these will help. So far just a lot of soreness but I'm managing. These will be ongoing weekly so this summer will be a take it easy one.

I am really hoping, wishing and praying that I will hit my goal soon and get a car under us.

Thank you for being a part of our journey

Maggie & Preston

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