UPDATE

There is hope for treatment. There are new answers. After years of being dismissed by doctors and told there was no treatment, a hard-won referral to an out-of-province specialist has found answers and treatment options for Catherine. Catherine has been diagnosed with Ehlers-Danlos Syndrome, Action Myoclonus (cause being explored), a heart arrhythmia, Postural Orthostatic Tachycardia Syndrome, and potentially has a neuromuscular disorder such as the rare RAPSN-Congenital Myasthenic Syndrome. It is likely that many of her previous diagnoses were misdiagnosed by a system that didn't care and didn't have the skills, resources, or expertise to properly assess her. Her treatment and care will be expensive and life-long and will need to be provided out-of-province from where we live. Your contributions will help start to get Catherine the treatment, mobility aids, and quality of life we expected she would never have again. Although this fundraiser has evolved and shifted focus, a wheelchair ramp where she lives is still a needed part of that journey. All donations will go towards Catherine's medical needs.

ORIGINAL

My name is Eric Milos and I’m married to one of those superwomen you hear about. My wife Catherine has survived so much. She has risen above abusive and violent situations and assisted others get out of them, too; she has managed PTSD; she prevented several suicides in those close to us and strangers, and she has been a survivor of suicide, having lost someone close to her. Catherine worked three jobs while finishing her degree. She rescued hundreds of animals from horrible situations both as a volunteer with multiple organisations and on her own. Whenever someone needs help, Catherine is there. It’s one of the reasons I married her, her generous heart and her ability to manage some of the worse situations imaginable and bring light to them.

She built us a home using her artistic sensibilities to decorate the hollow shell of our small house and maintain it when I was too immature and daft to realise all she was doing. Like many males of privilege, I took my amazing wife for granted. While doing all of that, Catherine also built dual successful careers as an Office Manger and a book industry professional for over fifteen years; writing, editing, publishing, and guiding others to do the same.

Just as her dream career was starting to take off, the unimaginable happened. It started with tremors and weakness that would come and go around the spring of 2018. Doctors wrote her symptoms off to stress. Then she began to feel increasingly tired and ached all over. Suddenly, she collapsed. She couldn’t move, and my efforts to carry her to and from the bathroom or hold her made her scream out in pain. Her tremors overtook her, she lost the ability to walk and care for herself. I found her on the floor several days when I came home from work, stuck there because she fell or fainted trying to walk or crawl to the bathroom.

Catherine also lost her ability to think and express herself. She slurred her words and said the opposite or wrong word to what she was thinking, struggled to recall things that occurred or was said only seconds before, and she lost her sense of time. Worse, her fatigue was so bad she would pass out and sleep for hours, only to wake still feeling exhausted no matter how much sleep she got. Sometimes, in the middle of conversations, Catherine will just stop talking and begin to crash falling into what I call microsleeps or full exhaustive sleeps.

After months of specialists and doctors we finally got a diagnosis of multiple central nervous system disorders. Essentially, her brain’s functioning had changed, for reasons unknown to the doctors, and sends her nervous system the wrong signals at unpredictable times to the rest of her body such as pain, weakness/muscle deactivation, muscle spasms/activation, and tremors. Her brain also receives signals like touch and temperature changes as pain. She has difficulty maintaining her body temperature and is often experiencing cold and hot flashes/low-grade fevers, too.

Worse, we learned that there is no cure for her condition and management of the disorders is an uphill battle. It took us years to find the right team that could help her manage, and though Catherine has fewer bed-bound days, she is still a moderate to severe case despite her persistence at pursuing any treatment she can.

Now, I get to experience everything Catherine did while I care for her and our life. We have had strong support from a few family and friends and their efforts have been a saving grace for us. Without them, I don’t want to imagine where we would be now. The gratitude we feel for their support goes beyond words.

Due to her disability, Catherine requires assistive devices and changes to our house so she can get around easier. She uses canes, an electric wheelchair (her weakness makes it impossible for her to use a manual wheelchair), and many other assistive devices. She requires my help regularly to dress, bathe, eat, and care for her basic needs. It is rare she is well enough to leave the house on her own. As a result, Catherine is pretty much housebound without someone assisting her to leave. We don’t have an accessible front door or ramp to let her get out of the house using her wheelchair on her own. She has to wait for me to carry her wheelchair over the steps and help her down them to go out. For someone who used to be as active as Catherine was, she knows like 3 types of Martial Arts and used to do yoga and belly dancing and exercise regularly, and with as independent a spirit as she has, it crushes her spirit to be so stuck at home. I know she longs to be able to go for a wheel around the block, or to the nearby coffee shop or grocery store for a short trip instead of waiting for someone to have the time to help her. She loves nature and she has been cut off from her places of solace and joy.

I would love to be able to build her a wheelchair ramp, but the cost of materials is exorbitant, let alone to have someone come in is way out of budget and there are few supports in our area, none of them Catherine and I qualify for. Believe me, we’ve looked into every possible option. In our area, the cost to build her a ramp is between $8000 and $35000 based on our research (a single wood board is $40 and composite and stone are two to three times that) and prices quoted to us by several contractors and builders.

Thanks to Catherine, who also used to do all of our repair and reno work because she worked for a contractor and did renos in her teens and is brilliant at figuring anything out, I have become quite handy with a power tool or two and have done a few renovations over the past few years. I would like to give back to her and restore her hope and a little bit of her spirit by building a ramp for her. Our least expensive option is to build it for cost of materials, but we still can’t afford it.

One of the other worst and limiting aspects of Catherine’s disabled experience is our cramped bathroom. It’s a hazard, with not enough room to put hand-holds and stabilizer bars and seats, a difficult to navigate tub I lift her in and out of on her worst days, and a sink and vanity that is coming away from the wall and broken. I’m constantly worried that Catherine is going to fall or that vanity (which is beyond repair and needs to be replaced) is going to give way as she leans on it for support even with my assistance.

Building an accessible bathroom would help give her a bit more independence in caring for herself on days where she has a bit more strength and energy. Also, heat therapy, such as an infrared sauna or heater/bulb is a supportive part of her treatment that helps ease the management of her symptoms, and we hope to add that to the bathroom so she has an accessible place to have her treatments. But, again, we have exhausted all options and can’t afford to do the necessary renos that cost between $35, 000 and $50,000 in our area.

Catherine’s treatments and medications cost upwards of $1000/month - $500 of that is just medications- (that’s in excess to the doctors appointments/costs covered by Canadian healthcare, work benefits, and our cost for her specialised diet). Despite me working full-time and Catherine receiving disability benefits, she has to go without treatments regularly because we just can’t afford that bill every month. This means that Catherine manages with higher levels of symptoms, including pain, that the treatments would otherwise reduce.

What I am asking of you, generous supporters, is to make the ramp and accessible bathroom a reality for my super-woman wife.

She does need many other changes and devices to improve her quality of life such as widening hallways, repairing windows and installing air conditioning, lights for her wheelchair for our night-time walks, a service dog (mobility and psychiatric), a few minor adjustments to our kitchen, a washer and dryer upstairs, motion-sensor hallway lighting, a walker, prescription sunglasses to help with light sensitivity, wheelchair access to the backyard, and support persons like a cleaner, nurse, and someone to help us with making her meals would also be god-sends, but on that last point I dare to dream as there are no socially funded programs available for any of that where we live. The only socially funded program person we could bring in would be someone to help her bathe, but I use the time to connect with Catherine and want to do that for her for as long as I am able. When it becomes too difficult for me in the hopefully distant future, we’ll bring someone in for that then.

I chose the ramp and the bathroom because they will improve Catherine’s quality of life significantly right away, everyday. They will also free up some time for me to assist her with other things and take care of otherwise neglected household needs.

The estimated total cost for the ramp is $8000 (building it myself), and for the bathroom is $40,000 (because we would need to have professionals do this work as it is beyond my abilities and time). In total, we are asking for your help fundraising $48,000. Here's a break down of how your donation will be used:

It’s a big number. A scary number to us, too. So scary, we can’t fathom raising it, let alone more than the goal. However, I have been advised that contributors like to know what will be done with funds raised above the goal. If that happens, I will likely faint or cry. Probably both. Once recovered from my condition of sensibility, we would put those funds towards the other changes and devices Catherine needs to make her life more manageable.

We appreciate your generosity and support. If you’re unable to contribute financially, we ask that you share our fundraiser with your network to help reach as many people as possible.

Thank you for stopping by to consider supporting us!