Honouring Lyme Moms - Chiara’s Story

AUG 20, 2017 — Today, Sue Faber and I finished reading the last of the 2,700 Lyme Letters in preparation for our upcoming meeting with Federal Health Minister Jane Philpott.

Many of these letters are written by mothers – sharing their heartache watching their children deteriorate and suffer right in front of their eyes. 

Today we would like to honour a very special mom.   Please click on the link below to watch the video.
https://www.thestar.com/life/health_wellness/2014/12/27/lyme_disease_debate_leaves_stricken_family_without_answers.html
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Fran Davide is an incredible mother to Chiara Cassuoli-Davide, a 25 year old Toronto woman who fell suddenly ill at age 15. Chiara tested positive for Lyme disease and her symptoms started after a trip to the cottage and a strange round mark on her foot. 

No one knows all the contributing factors in Chiara’s rapid decline, and there are still so many unknowns around tick-borne illness. But I think every parent wants and deserves the same thing when it comes to their children’s health: for every possible explanation to be fully evaluated and meaningfully explored.

Chiara is now almost 25 years old, she weighs 50 lbs and has been incapacitated and non-verbal for the last 8 years. We join Fran in praying for a miracle for Chiara.

In the video, Chiara sings “Let it Be” and we would like to close by highlighting the words in this song which are the hope and prayer of millions around the world:

“For though they may be parted,
there is still a chance that they will see.
There will be an answer, let it be.”

Here is Chiara’s Story, as told by her mother, Fran, in her Lyme Letter to Minister Philpott:

“Dear Dr. Philpott

After reading your profound biography, I address this letter to you as our federal Health Minister but most of all as a mother who shares the heartbreak and experience of a child with a devastating illness. My hope is that with your leadership, the Ministry will give the much needed resources to Lyme Disease that has reached a catastrophic epidemic.

I am a Toronto mother distressed by the lack of quality and essential health care services for my daughter, Chiara. 

In September 2007, my vibrant and healthy fifteen year old daughter started having headaches, cognitive decline, and nightmares. Chiara’s health deteriorated rapidly, her brain eventually showed atrophy, and she has been fully incapacitated and non verbal for the past eight years. 

As a determined mother with unwavering faith and devotion to my daughter, I embarked on a search for answers and ten months after the onset of her symptoms, I discovered Lyme Disease. As a potential diagnosis it made a lot of sense as she had been to a cottage in August and we discovered a circular mark, though not the classic bull’s eye rash, on her heel. This opened a whole new can of worms and led to overwhelming and disturbing discoveries leading to the ignorance of Vector Borne Diseases, Lyme Disease in our health care system.

After three admissions and numerous tests at the Hospital, including the standard Canadian test for Lyme, she remains with a diagnosis of neurodegenerative disease with an unknown etiology that offers no cause or treatments.

In my continued search, I sent her blood work to the USA and Germany for testing where she received a positive result for Lyme; however, the results were not recognized by our doctors in Canada where she continued to test negative. Our only recourse was to travel to the USA, Germany, and Italy for treatments, which left us in financial ruin. 

It should be unnecessary for Canadian families to have to take the costly step of obtaining effective testing and treatment outside of our country. According to treatment practices, earlier detection would have resulted in immediate treatment and therefore greater potential for recovery. To this day, the Canadian testing standards remain grossly inadequate.

As a mother, I feel Chiara was abandoned by our health system. She is now turning 25 years old and has been in palliative care at home for ten years. Her health status remains unchanged, weighing only 50 pounds she continues to deteriorate with no prognosis available.

I have recently been widowed as this nightmare tore my husband’s heart and he passed with liver cancer in 2015. I am Chiara’s sole caregiver in our home 24/7 with no family support, unable to work, and insufficient support through government services. I am completely overwhelmed, emotionally drained, physically exhausted, and struggling with my own health issues. Despite the adversity, I remain a determined mother with an unfailing search for “a miracle”.”

http://www.chiaradavide.com/