Help Keep A Family Afloat!

Hello,

My name is Giselle Ruemke-Leigh, and I am raising funds for my friend Sovay Desmarais and her husband, Chuck. Sovay has had a succession of severe, complex, and compounding illnesses that have forced Sovay, Chuck, their kids, and Sovay's mother Barbara, to move from their home in Boissevain, Manitoba to Victoria BC in 2022. The temperature extremes were exacerbating Sovay's health issues, causing accessibily and mobility barriers and she was also unable to access adequate medical care for her complex health needs, as well as Chuck's and their children's.

The family has been trying to sell their home, and so far has not been able to find a buyer for it. Because they still have mortgage payments to cover, they were forced to rent it out. Unfortunately the renters damaged the home quite a bit, requiring expensive renovations. They are now struggling to cover their two mortgages and additional bills. Chuck is working full shifts seven days a week to try and keep up with their expenses, and between taking care of Dave the dog, supporting their adult children when they need help, caring for Sovay at home and with visits in the hospital, Chuck is stretched very thin, and is at risk of his own health issues worsening from burnout. Repairs to their home and ongoing bills have eaten every last bit of their savings and credit. The funds we are raising will help them pay down their debts, and give them some breathing room, hopefully allowing Chuck to go back down to full time instead of having to work so many extra hours and days.

It's important to me to raise these funds, because the Desmarais family is one of the most amazing bunch of humans I've been lucky enough to have in my life. I met Sovay through the Myasthenia Gravis community years ago, and am honoured to call her a friend. She's a dedicated Mom to her kids and dog, a supportive wife, daughter, community member, and friend. She is a wonderful and unique blend of strong, smart, sensitive, very fun, a bit neurospicey, and a very talented artist, singer, craftswoman, and musician. This is a woman who, despite having serious challenges of her own, will do everything she possibly can to show up and support others in need, meanwhile casually cracking offhand, hilarious jokes as part of any conversation. Chuck is also awesome, and doing everything he can for Sovay and his family. This family has had more than its fair share of challenges, including complex health issues and disabilities impacting most members. The strength and wit that they share has brought them through all challenges to date, and will continue to, but they truly need our help now to keep from drowning financially.

Their finances have been most impacted by health issues. Sovay had to leave her career as a nurse a few years ago due to Myasthenia Gravis, an autoimmune neuromuscular condition that causes muscle weakness and difficulty breathing. She had a major surgery to remove her thymus in 2018, in the hopes that this would improve her MG symptoms. Unfortunately, it did not, and given the problems that started following her surgery, it appears as though her vagus nerve had gotten injured. She also developed very painful Rheumatoid Arthritis, and was also placed on prednisone as well as IVIG and immune suppressants for MG. While this did control the severity of her Rheumatoid Arthritis and neuromuscular symptoms from MG, she also developed worsening side effects and other complications related to the immune suppression.

During the pandemic, Sovay came down with several bouts of COVID, which presents more severely in people with existing complex and chronic health issues. Immune suppression medications such as prednisone also make people vulnerable to infections and other illnesses. Sovay became sick from a fungal infection that has been difficult to treat, possibly picked up in the hospital during one of her surgeries. Her health issues started to compound further, and she gradually lost the ability to swallow and digest food. She began having uncontrollable vomiting, and any food she tried to eat would just come right back up. So her doctors placed her on a feeding tube, and this has caused a lot of problems with pain and multiple infections, and surgeries for the tube getting misplaced if she became ill with severe vomiting.

The repeated tube infections caused concurrent and painful fungal and bacterial infections along with severe nausea and abdominal pain, requiring strong, long term antibiotic and anti fungal treatments, much of which has also been difficult for Sovay's body to tolerate. Despite these challenges with the J-Tube, Sovay requires it for 100% of her nutrition and medications.

The tube misalignments, infections, and Rheumatoid Arthritis were already causing worsening pain levels, and unfortunately through out this already very difficult time, she began experiencing falls. These, combined with what was later found to be a weakening of her spinal bones, possibly due to prednisone or another medication, caused bad fractures of her vertebrae, and oseomyelitis in her neck and in her lower spine. This has been extremely painful, and she has actually completely lost one of her discs in her back. Other discs have been weakening and are also at risk. Nine months ago, she had so much pain in her spine, and through testing, it was discovered that she had an infection brewing very close to her spine. The Infectious Disease team put her on long term antibiotics, and concurrent anti fungal meds as well. Her other doctors agreed to lower her immune suppressant medications to allow her immune system to fight the infections. They hoped that her body would be able to beat the infection, but a few months ago, there was no change. The infection hadn’t improved. She has had multiple hospitalizations in the past few years, and battled sepsis on at least two occasions. She has been through so much!

Sovay has experienced significant decline in her health over the last few years, and when she can walk, she requires the use of crutches or a walker, a tilt recline wheelchair when she is too week or in pain to walk, and a BiPap to help her breathe at night.

And yet, somehow, during all of these chronic and complex challenges, despite these multiple and compounding issues, Sovay has managed to support her family, friends, and community extremely well during the difficult move to Victoria. She helped get her children set up and housed, and attending UVic. She was able to get her Mom packed up and set up in a new apartment in Victoria. And she, throughout all of this, has still managed to maintain her characteristic sense of humour and compassion for others. She has volunteered much of her time and limited “spoons” supporting others as a board member and more recently as a volunteer for the Myasthenia Gravis Society of Canada.

Sovay has not felt well in some time now, but in the last two weeks she began to feel quite a bit worse. She attended the ER in worsening pain, and has been found to have a rapidly growing abscess growing along her spinal cord and wrapping around it, causing compression of her spinal cord. This is a very serious condition, and quite tricky for her medical team to address, given the location, the risk of surgery near the sensitive neurological structures nearby, and the concurrent risk of the infection spreading further. The antibiotic treatment plan they have had her on for the past nine months has not worked, and they must address the complex situation with antibiotics, antifungals, and delicate neurosurgery.

At present, Sovay is in hospital, and has had the first of three surgeries. The first was done today, an aspiration/biopsy to determine the type of bacteria and antibiotic required to treat it. The second, which is planned for next week, will involve a surgical debridement and cleaning. Once she has recovered from this, the third surgery will be a replacement of her collapsed vertebrae, and stabilization of her spine with a fusion surgery. All of this will require a lengthy recovery time, and rehabilitation process.

This family is stretched so thin. If we can help them at least take care of some of their debt, and keep the lights on, this will take an immense amount of pressure off of them, and lessen the stress load on Sovay and Chuck considerably. Stress suppresses the immune system, and with everything Sovay is going through, and how much she cares for and want to be there for her loved ones who are also dealing with challenges, any stress we can lift from her shoulders will help support her in her body’s battle against this infection.

Will you join me in helping Sovay and her family? Please donate what you can afford, and share this campaign amongst your networks. Every little bit helps, and if we all pitch in together, I know we can make a great difference to this family. Thank you!!

With Love,

Giselle

*Notes on the pictures:

-Sovay and Chuck at my wedding, just days after they moved to Victoria

-Sovay in the midst of a severe Myasthenia Gravis flare, with severe ptosis

-Sovay smiling and looking cute, with her friend the IV pole for her antiobitic treatment.

-Sovay looking less happy about having a feeding tube, prior to the J-Tube surgery.