However, although she was grateful to finally learn of her diagnosis she also learned there was no treatment or cure due to its rareness in nature.
Stiff Person's Syndrome causes her to be stuck in painful and unnatural positions for days or even weeks on end. She also suffers from terrible convulsions and involuntary movements. These spasms are unexpected and can begin from a range of triggers including, but not limited to, sound, pain, or injury. A simple car horn can begin a full body spasm that will not end without hospitalization.
These spasms are so severe in nature that they break bones, having caused severe structural damage in her body over time. Most recently, she fell victim to two collapsed lungs in less than two months time. This disease is characterized by such severe and unrelenting pain with no means of relief. As a result, Caylee is plagued by the neverending cycle of chronic fatigue and chronic pain.
She fought for years to strive for some degree of normalcy in life until a rapid decline in health stopped life in its tracks. She has exhausted all suggested treatment options and continues to search for experimental yet successful trials. However, these prove to come at an overwhelming cost with no promise of success.
Today, she is the mother of a four year old son and spouse to a wonderful man who helps to take care of the daily activities so many of us take for granted. As a result, he is unable to work and provide income to a household with so many greater expenditures than a normal household.
The only means of managing the symptoms of Stiff Person's Syndrome is through the use of overwhelmingly costly medications. Although they may aid in maintaining some quality of life, they are certainly not an antidote.
We all know the burden associated with living paycheck to paycheck, yet that burden can prove overwhelmingly detrimental to a disease that is triggered by stress. Their life is stricken by fear; fear of the combination of living expenses, medical expenses, and other financial obligations with no income to support them.
Caylee has continued to inspire us all on a daily basis by choosing to laugh rather than cry and smile rather than sulk. She finds such pleasure in the little things so many of us take for granted on a daily basis. She amazes us daily by proving that she will never lose her fight to live.
By donating to this GoFundMe, you will change the life of a family in need. Nothing is too small to make a difference, and we offer our sincerest gratitude for your generosity.
- Kathleen Consolo
- jeffrey kravitz
- Melinda Mills
- The Staff Of Hilltop Nursery School
- Lillian Fitzgerald
Organizer and beneficiary
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