Hope for Eleanor Riddell
Donation protected
Hello, our names are Jamie and Andrea. We have a wonderful two and half year old daughter named Eleanor. Since the age of three months old Eleanor has experienced recurrent high fevers, joint pain, mouth ulcers, extremity swelling, abdominal pain, rashes, extradite on her tonsils, and chronic pain. Eleanors normal is a fever between 104 and 106 lasting 5-7 days every couple of weeks.
Eleanor has spent a good majority of her time since birth living very differently than the normal child. Eleanor remains undiagnosed despite the efforts of two different paediatric rheumatologists (one at CHEO one at SickKids), an immunologist, a gastroenterologist, two pediatricians, and several emergency doctors. Her physicians suspect she has an autoinflammatory disease based on her clinical presentation. Autoinflammatory diseases are a group of chronically debilitating or even life threatening diseases.
All testing available in Canada has been explored for Eleanor leaving her without a diagnosis. Her medical team requested the funding for whole exome genetic testing from OHIP as the testing is done outside of Canada. OHIP denied this funding for Eleanor despite the urgency placed on it from her medical team pleading that an early diagnosis is crucial to enable treatment initiation before organ damage occurs. Her team believes whole exome genetic testing will provide an underlying diagnosis for her condition and pave the way for specific treatments.
When Eleanor came into our lives we were overfilled with joy. Our new perfect baby had a bright future ahead of her. Like all parents we wanted to provide the best for her. We soon struggled with growth and feeding. Eleanor was referred to a local pediatrician for failure to thrive. Eleanor started getting unexplained fevers alongside her other symptoms at the age of three months old. It has been a long journey of endless medical appointments with no answers. Eleanor's childhood is accompanied by pain and suffering. We continue struggling to support her.
Redefining normal has been our way of coping with this new life we have been living. Our expectations have changed. As Eleanor's parents it is our job to advocate for her, and be strong for her. Watching this undiagnosed illness impact our daughters life without answers is inhumane. When my daughter lays in my arms begging for me to make her feel better my heart breaks in a way I never knew was possible. We fear losing our daughter. To see the daily limitations this undiagnosed and untreated disease has on our child pushes us to seek help funding the test she needs for a diagnosis.
Diagnosis for Eleanor will help her have the best quality of life available to her. We long for the access to support resources and treatment to help our daughter. We dream of Eleanor living a life with pain management and relief of symptoms. We want to see our daughter succeed to the best of her ability. We do not want our daughter being excluded because she is chronically ill. Eleanor has endured countless unnecessary treatments for misdiagnosis. She has been given unnecessary tests for her bizarre symptoms. We need early intervention to any possible long term detrimental effects that this may be causing to her health. We want our daughter to attend school like a normal child, and begin living like a normal child. We want our daughter to have the nostalgia of a happy childhood. I fear the impact that living undiagnosed will have on Eleanor.
As Eleanor's parents we are struggling. The expenses that we have incurred over the last two years are substantial. Whole exome sequencing is not within our means but offers our best chance, and last chance at finding a diagnosis for Eleanor. This out of country test costs five thousand dollars.
Living with these symptoms has greatly impacted the quality of Eleanor's life along with ours. We have struggled greatly to adjust our idea of normal. We fear Eleanor losing the rest of her childhood to fever and pain. We fear losing Eleanor. We fear the only normal my daughter knowing is chronic inflammation and pain. We fear that without a diagnosis organ damage will result, due to lack of treatment. We have exhausted all other tests, doctors and resources, and still lack an answer thus far as to why this is happening to our daughter. A childhood should be full of joy freedom and exploration. Please assist us in continuing our search for an answer.
From the bottom of our hearts, we thank you for the support and love.
Eleanor has spent a good majority of her time since birth living very differently than the normal child. Eleanor remains undiagnosed despite the efforts of two different paediatric rheumatologists (one at CHEO one at SickKids), an immunologist, a gastroenterologist, two pediatricians, and several emergency doctors. Her physicians suspect she has an autoinflammatory disease based on her clinical presentation. Autoinflammatory diseases are a group of chronically debilitating or even life threatening diseases.
All testing available in Canada has been explored for Eleanor leaving her without a diagnosis. Her medical team requested the funding for whole exome genetic testing from OHIP as the testing is done outside of Canada. OHIP denied this funding for Eleanor despite the urgency placed on it from her medical team pleading that an early diagnosis is crucial to enable treatment initiation before organ damage occurs. Her team believes whole exome genetic testing will provide an underlying diagnosis for her condition and pave the way for specific treatments.
When Eleanor came into our lives we were overfilled with joy. Our new perfect baby had a bright future ahead of her. Like all parents we wanted to provide the best for her. We soon struggled with growth and feeding. Eleanor was referred to a local pediatrician for failure to thrive. Eleanor started getting unexplained fevers alongside her other symptoms at the age of three months old. It has been a long journey of endless medical appointments with no answers. Eleanor's childhood is accompanied by pain and suffering. We continue struggling to support her.
Redefining normal has been our way of coping with this new life we have been living. Our expectations have changed. As Eleanor's parents it is our job to advocate for her, and be strong for her. Watching this undiagnosed illness impact our daughters life without answers is inhumane. When my daughter lays in my arms begging for me to make her feel better my heart breaks in a way I never knew was possible. We fear losing our daughter. To see the daily limitations this undiagnosed and untreated disease has on our child pushes us to seek help funding the test she needs for a diagnosis.
Diagnosis for Eleanor will help her have the best quality of life available to her. We long for the access to support resources and treatment to help our daughter. We dream of Eleanor living a life with pain management and relief of symptoms. We want to see our daughter succeed to the best of her ability. We do not want our daughter being excluded because she is chronically ill. Eleanor has endured countless unnecessary treatments for misdiagnosis. She has been given unnecessary tests for her bizarre symptoms. We need early intervention to any possible long term detrimental effects that this may be causing to her health. We want our daughter to attend school like a normal child, and begin living like a normal child. We want our daughter to have the nostalgia of a happy childhood. I fear the impact that living undiagnosed will have on Eleanor.
As Eleanor's parents we are struggling. The expenses that we have incurred over the last two years are substantial. Whole exome sequencing is not within our means but offers our best chance, and last chance at finding a diagnosis for Eleanor. This out of country test costs five thousand dollars.
Living with these symptoms has greatly impacted the quality of Eleanor's life along with ours. We have struggled greatly to adjust our idea of normal. We fear Eleanor losing the rest of her childhood to fever and pain. We fear losing Eleanor. We fear the only normal my daughter knowing is chronic inflammation and pain. We fear that without a diagnosis organ damage will result, due to lack of treatment. We have exhausted all other tests, doctors and resources, and still lack an answer thus far as to why this is happening to our daughter. A childhood should be full of joy freedom and exploration. Please assist us in continuing our search for an answer.
From the bottom of our hearts, we thank you for the support and love.
Organizer
Andrea Riddell
Organizer
North Bay, ON
