Cheryl’s Fight Back to Health

About Cheryl:

My dear friend Cheryl Stacey has been battling debilitating Chronic Neurological Lyme Disease for more than 7 years now.

For those of you who might not know her already, Cheryl is a loving mother of two, a daughter, a sister, an aunt, a loyal friend, and a fighter.

This disease and its co-infections have taken so much from her.

Even though this journey has taken a lot from her already, Cheryl still tries to keep a smile on her face and make her friends laugh whenever she is able to see them. That is Cheryl. She’s a wonderful person. A person who would do anything in her power to help those around her.

And now, she could really use some help herself.

 

I've created this go fund me page with hope that together we can help Cheryl get back to a normal life. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It starts small. A simple act of kindness, but it can ripple out and create an ocean of prosperity in the world. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Cheryl’s Health Battles: 

For anyone unfamiliar with Lyme disease, it is extremely difficult to treat once it becomes chronic. Extensive and comprehensive treatments are required. Many, if not most of these treatments are not covered by Canadian Health Care or insurance.

In addition to Lyme Disease and multiple coinfections, Cheryl has also been diagnosed with an autonomic nervous system disorder called Postural Orthostatic Tachycardia Syndrome (POTS), a rare genetic immune condition, Mast Cell Activation Syndrome (MCAS), Ehlers-Danlos Syndrome (connective tissue disorder), primary IgG immune deficiency, autoimmune autonomic neuropathy (where her immune system attacks her nerves), small fibre neuropathy, fibromuscular dysplasia (causing narrowing of the arteries in her brain, increasing stroke risk) and severe vertigo.

She’s had multiple mini strokes, blood clots in both lungs, and other vascular issues. She recently suffered a Pulmonary Embolism this spring 2021, which led to a partial collapse of her lung, and she was also diagnosed a few weeks ago with an aneurysm in her heart.

Cheryl is seeing a specialty Haematologist from St. Michael’s Hospital, who works with rare blood disorders/oncology, and investigations are underway to try and determine the cause for the blood clotting abnormalities.

The past two years have been especially difficult – Cheryl went into autonomic failure in the fall of 2019, and was hospitalized for nearly 2 weeks.


She was diagnosed with autoimmune neuropathy and began blood plasma exchange/plasmapheresis at St. Michael’s hospital days before Christmas 2019.

A central catheter was surgically implanted in her chest and this procedure involved removing plasma from Cheryl’s blood and transfusing donor plasma into her bloodstream. Given her immune deficiency, Cheryl is prone to infections and unfortunately developed a central line infection, which can be life threatening. This was during wave 1 COVID last year. Treatments were delayed, her neuropathy worsened and she fell and jarred her PICC line. Cheryl was able to eventually re-site her PICC line at Mt. Sinai hospital last May 2020, but unfortunately complications occurred and her PICC line fractured during the procedure.

 

Treatments:

As part of her treatment Cheryl had a permanent PICC line surgically implanted, which is a central catheter port that is placed in the arm and runs directly into the heart in order to help deliver IV saline and other medications intravenously.

She started immune therapy at St. Michael’s hospital last June doing modified IVIG/SCIG, whereby donor blood immunoglobins are infused into her bloodstream. This involves inserting 4 needles and doing an IV infusion in her legs twice per week. This is ongoing, long-term immune therapy targeted towards managing her autoimmune and immune deficiency.

She receives IV saline every 2 days via her PICC line to help keep her blood pressure stabilized. The autonomic nervous system controls all automatic functions such as blood pressure, heart rate, digestion, etc. Given her condition, Cheryl’s body cannot regulate these processes and she is prone to fainting spells.

Medications and continuous IV saline are needed to maintain her blood pressure and regulate her heart rate.

Cheryl also has chronic iron deficiency anemia due to malabsorption, and needs to go for ongoing blood iron infusions at St. Michael’s hospital in the ICU.

All of this has been wreaking havoc on her central nervous system, brain, heart, GI tract, joints and just about every other area in her body. There are times when she has been unable to walk, and there have been times when she has been unable to even get out of bed due to debilitating fatigue.

Treatment Costs:

Cheryl is currently taking more than 40 prescription medications, and multiple medical supplements every month.

Drug costs alone are astronomical.

Drug plans only cover basic medications. Many of Cheryl’s medications are for rare conditions, so they are considered ‘exceptional’ and not covered under standard plans. Most of her medications range from $600-$900 per month each. The heparin injections for her pulmonary embolism were $1100 per month. Even with partial drug coverage under her health benefits plan which she pays for, she pays hundreds of dollars out of pocket monthly, and that is on top of the costs for Lyme disease treatments.

Rehabilitation and physical therapy have been central to Cheryl’s recovery, and are essential for improved functioning and quality of life.

Cheryl has done multiple intensive physical therapy programmes including neurological rehabilitation, cardiac rehabilitation at Oakville hospital, vestibular rehabilitation, vision therapy, and physical conditioning.

Unfortunately, the majority of physical therapy programs are not covered. Extended health insurance coverage is minimal and out of pocket costs are extremely high. Vision therapy alone is $1400 per session, with an average of 3-4 sessions.

In addition there are travel and accommodation costs for out of province and out of country treatment for Lyme disease, as well as costs for consultations with various medical specialists, such as when Cheryl saw a Neuro-Immunologist in NYC, all out of pocket.

Add to this the costs for medical testing, travelling to hospitals, parking, medical equipment, costs for adaptive aids and mobility aids (cane, walker, etc), medical supplies - the list goes on and on.

For those with rare medical conditions, many tests are out of pocket. Immune tests, genetic tests - costing upwards of hundreds of dollars each, as well as Lyme disease tests, and tests to check treatment progress. Blood testing is only partially covered, as OHIP covers basic blood work only.

More Financial Blows:

Chemical/environmental sensitivities make many environments intolerable and dangerous for Cheryl, and have forced her to undertake costly updates to her home in order to make it a safe space for her.

This illness forced Cheryl to medically retire from a career that she loved and worked so hard to establish, and she also transitioned to single parenthood throughout the span of her illness.

 

All of these circumstances have left her financially devastated, to say the least.

Family Health:

Sadly, Cheryl’s daughter Natasha has also been diagnosed with Lyme Disease, Mast Cell Activation Syndrome (MCAS) as well as hereditary immune condition(s)


The family’s medical bills just keep growing.

 

Due to the genetic immune condition(s) and Mast Cell disorder, both Cheryl and her daughter are prone to recurrent anaphylaxis. The immune disorders essentially make them allergic to everything. Because they have an extra gene, there is no cure... the condition just has to be managed. Cheryl and her daughter Natasha both started having significant allergic reactions and recurrent breathing issues. They have been working with their Immunologist at St. Michael’s hospital and doctors to try and remove all potential allergens and environmental triggers, and essentially create a “bubble”to minimize reactions. It has been overwhelming and extremely expensive. Managing the immune conditions is complex and difficult.

Because many of Cheryl’s, and now her daughter’s medical conditions are rare, there is limited knowledge, support, resources and funding available.

Specialists believe Natasha also has POTS (dysautonomia) and she has started treatment for that. At age 20, managing these complex illnesses while trying to attend university courses has been overwhelming, but she has maintained her positive spirit.

————————————————————————
I want more than anything to see Cheryl get the help that she so desperately needs in order to get her life back, and to help her daughter fight her own battle as well. Please help if you can. Cheryl really deserves to have some goodness come her way.

————————————————————————

How can you help?

1. Donate if you can. Any amount is appreciated.

2. Share this campaign information on your social media accounts.

3. Email this information to people who may not have social media accounts.

 

If you would like to learn more about Lyme Disease and how to help protect yourself and your loved ones, please visit https://www.canlyme.com

 

Thank-you. We are all more grateful for your help than words can ever explain.