#SAVESYLVIE
Hello! My name Ashley Mcminn and I created this GoFundMe on behalf of Sylvie and her mother. This GoFundMe is written by Sylvie's mother for her daughter Sylvie Tress, her only child, to plead for your kindness and help, to save her!
ABOUT SYLVIE
Sylvie is an incredibly bright young woman, a beautiful soul with a kind heart. She has immense courage and strength which helps her endure year after year! She has now surpassed 10 years, enduring daily unrelenting excruciating pain, which would challenge even the strongest person’s resolve. Life can be cruel, merciless and unfair, but she never asked “why me”, She has suffered so much and despite it, she has found purpose and meaning in her life, by advocating about her diseases, to not only educate but also help others suffering. Please read on, and in these few pages I have written, you will discover strength and resilience that very few people posses. My beautiful child is a profile in uncommon fortitude!
SYLVIES STORY
Overnight, her world changed forever and life would throw her blow after blow, but she endured!
• September of 2014, Sylvie was about to start university to fulfill her dream of becoming a neuroscientist. Days before school started, Sylvie woke up screaming in pain, in her spine and she was rushed to the hospital. During the next few years, she would be in and out of the hospital. She was on powerful medications with little effect. These years were very challenging, not only physically but emotionally for Sylvie. All her friends moved on with school and life. The pain was so bad that nothing could come into contact with her spine without causing excruciating pain. We had no answer as to what was causing this, but she endured!
• October of 2018, another blow, as she went from walking in the morning to not being able to bear weight, wear shoes, not even socks. She could not even cover her feet with a light sheet. Once again, she spent months in hospital. New medications, new specialists, many theories but no answers until a biopsy was done and we finally had an answer: Small Fiber Polyneuropathy (SFN). Small Fiber Neuropathy causes the small fibers of the nervous system to die and as they die they cause excruciating pain. She was now in a motorized wheelchair, as this neurological condition is progressive. I cried in secret every night, I did not want her to see me falling apart, her heart would break.
• November of 2021, another devastating blow, the cruellest one. Sylvie was diagnosed with Complex Regional Pain Syndrome, (CRPS) after a small injury to her left hand. CRPS is a neuron-inflammatory syndrome, which manifests as extreme pain, burning, electric shock like pain and has been described as having the affected limb go through a wood chipper. Even the air can cause excruciating pain. It is rated 42-46 out of 50, on the McGill pain scale, (a pain scale to assess high impact pain). CRPS is rated higher than unprepared childbirth and even amputation of a digit. It is the highest pain condition known. CRPS can spread to the entire body including organs. Her world and our world came crashing down. There is no cure and no treatments. It is called the “suicide disease”, as many who suffer cannot endure the daily, 365, 24/7 intractable, unrelenting pain! Even the slightest touch, movement, vibrations, cause pain. Water feels like acid on the skin. It can affect skin, teeth, hair and nails. It is like being burned alive! I begged and pleaded with God to take away all the pain from my child and give it to me. I had lived a life, followed my dreams, fell in love and I was blessed with this precious child. She did not get the chance to chase her dreams, to fall in love, to live a life!
She has also been diagnosed with a rare disease, Undifferentiated Systemic Auto Inflammatory Disease (USAID) and other comorbidities, which contribute to the inflammation and overall pain. Yet, Sylvie persevered. She advocated for CRPS and she never gave up the hope of a better future for herself. I don’t know where she finds the strength to endure day after day.
• June of 2024, marked the 10th anniversary of being ill and fighting. 10 years of excruciating pain. 10 years of holding onto the hope that this nightmare will end. 10 years of holding onto her dreams and never giving up. Then, out of nowhere, she started to react adversely to the treatments which had allowed her to have quality of life.
One by one, all her treatments were discontinued, and her condition began to rapidly deteriorate. Within just two months, her health declined so severely that she spent most of the summer in and out of the hospital, a cycle that continues to this day. But the worst was yet to come. During one of these hospitalizations, she suffered injuries to her legs and feet. This caused her CRPS to spread to her feet and, eventually, to her right hand. The only treatment available in Canada to stop the spread of CRPS is Ketamine Infusions, which she had to discontinue due to an adverse reaction. She was re-hospitalized in an attempt to reintroduce Ketamine Infusions, but this has proven to be extremely challenging. During this hospitalization, we discovered the reason behind her adverse reactions to treatments...
MAST CELL ACTIVATION SYNDROME (MCAS)
another rare disease. Mast cell degranulation, a process central to MCAS, occurs when mast cells release inflammatory substances such as histamine, TNF-a, and tryptase into the bloodstream. This triggers severe inflammation throughout the body, potentially leading to organ damage. MCAS has a profound impact on her CRPS, which is a neuro-inflammatory disease. The systemic inflammation caused by MCAS exacerbates her CRPS symptoms significantly. This disease is so rare that very few doctors are knowledgeable about it or capable of treating it effectively. Although Ketamine Infusions have been reintroduced in the hospital, they have not been successful. Her body continues to fight the histamine release triggered by these infusions. A critical error by a doctor during her treatment caused a massive histamine release, resulting in her entire body burning with unbearable pain. She was discharged from the hospital in worse condition than before. In Canada, there is no established protocol for treating CRPS, no CRPS specialists, and no treatments specifically tailored to this condition. The treatments available aim only to lessen the extreme pain or attempt to prevent the spread of CRPS.
Unfortunately, most healthcare professionals are unfamiliar with the devastation caused by CRPS, which has led to irreversible mistakes in her care. For instance, one doctor told her, “Your limbs are dead,” while another referred to her CRPS-affected hand as “the thing in your hand.” She was never provided with physiotherapy for her CRPS. Instead, she was prescribed increasing amounts of medications, leading to harmful polypharmacy, which is now causing additional harm to her health.
MEDICAL ASSISTANCE IN DYING
They have suggested MAiD (Medical Assistance in Dying) on multiple occasions. MAiD should not be a substitute for a lack of resources and treatments. MAiD should not be a substitute for health care! Her CRPS has now become refractory. She has yet to explore all the other treatments she has had to forgo, and nothing is providing any relief. The complications due to MCAS and the mistake in the hospital have made the pain all-consuming, physically, mentally, and emotionally. We went to these hospitals seeking urgent stabilization so we could try to pursue treatment in other countries. Instead, she is far worse due to the ignorance surrounding her conditions. She has lost so much weight; she is not eating, moving, or sleeping due to the excruciating, unrelenting pain. She is 164 cm tall and weighs only 30 kilos.
She is critically ill, both CRPS and MCAS can attack your organs. She can no longer do even the most basic tasks, such as eating, drinking, changing her clothes is excruciating for her, she cannot turn or move, she is completely bedridden, she is getting bedsores, she is burning alive! Every second is a neverending nightmare! She needs around the clock care now. She is not going to make it unless she gets the urgent interventions she desperately needs. We have reached the end of the “road” in Canada, and the only option left for her is Medical Assistance in Dying (MAiD). All her conditions cause excruciating pain. Imagine “living” with all these painful conditions. She can’t take it anymore. She meets all the requirements for MAiD. She is desperate for the pain to end, but Sylvie doesn’t want to die - she wants to live! MAiD is intended to end needless suffering due to a “grievous and irremediable medical condition.” It is not meant to be used as a substitute for a lack of resources and treatments. There are treatments for CRPS and MCAS available in other countries. However, the cost of these treatments is financially prohibitive for us.
OUR PLEAD
I am here to plead for your help, to raise the necessary funds for these treatments, travel and accommodation expenses as well as for a travel motorized wheelchair and other disability aids we will need for our lengthy stay. We have found different treatment options in several European countries, genetic testing to figure out why she has so many painful conditions, experimental treatments, which are not offered in Canada, additionally treatments in the USA, with promising results. There is also a treatment in Germany called the “Ketamine Coma” which is exactly what it implies. You are put in a medically induced coma in order to reset your brain to stop experiencing pain. This will be our last resort, if the treatments in the other European countries do not succeed, as there is a lot of risk associated with the “Ketamine Coma”
TREATMENTS
We are contacting several places both overseas and in the USA to find the best options for treatments. We will exhaust all of the options available. If we are able to travel for these treatments and they are successful, she will need lengthy specialized rehabilitation. Our goal is to raise about $150,000 Canadian dollars.
Life is not always an easy journey, and for my beautiful child, this journey would test her resolve and her strength to no end, but she has endured. She watched life passing her by, but she did not give up. She is determined and a fighter. For so long she held onto the hope of a future in which she becomes a neuroscientist and had promised herself, she would focus her research on this devastating disease, CRPS and Pain, to end the suffering of all those with CRPS and other painful diseases. But now, she has reached a point where she can no longer hold on, her body and soul is so tired from fighting for so long.
The pain of seeing your child suffer so much and for so long and not be able to alleviate it in the slightest, has been unbearable. My heart aches for my child. I am afraid she will die! I am afraid that her not eating, not being able to move or sleep because of the excruciating pain, will kill her. I do not want my child to die. Time is not on our side, as I and her father, have some serious medical conditions and we desperately want to see our child free of pain and starting her life! I appeal to anyone who has ever had to watch a child, a loved one suffer, you know the heartache. This is my heartfelt plea from a mother desperate to save her child. I plead to anyone who can find it in their heart to donate, any amount, no amount is too little. And if you are unable to donate, please spread the word, to family, friends, social media, anyone who can possibly help us.
Please help us reach our goal. Help us #SAVESYLVIE. She will not see another Christmas or New Year, if she doesn't get the urgent care she needs! With your help we can save her life, she doesn't have much time left! Her life cannot end before it even began. I don’t want my child to die!
ALL LINKS TO SYLVIE’S SOCIAL MEDIA and a Youtube video link from the conference at CORD (Canadian Organization of Rare Disease) where Sylvie is speaking about her rare diseases.
TikTok: https://www.tiktok.com/@savesylvie
Instagram: https://www.instagram.com/silverrlinings63/
Facebook: https://www.facebook.com/SylvieTress
SYLVIE HAS A DEDICATED TEAM POSTING UPDATES ON HER SOCIALS
Organizer and beneficiary
Maria Tsipas
Beneficiary