Help Give Clara Back Her Hands
Donation protected
We all want to be independent and self-sufficient.
Now imagine waking up to your regular day, but this day, something is different. Today you don't get the use of your hands, at least, not without debilitating pain. Try and consider how your life would be different without the full, pain-free, use of your hands.
This is Clara's reality.
We have a wonderful health care system in Canada, but it does not and cannot cover the cost of all the care and assistance that come with chronic pain and illness. Clara needs your help so that she can resume living a full life and be a contributing member of society, which she so desperately wants to do. If only 1% of the people who have enjoyed her creative projects donated the cost of a cup of coffee, these fundraising needs would be easily fulfilled.
Clara would not be turning to charity if it was not her last option.
She has tried everything she can think of including years on waitlists (as her health continued to deteriorate) and seeing 14 specialists, who have so far provided no real answers or help. She needs the resources to be able to afford new therapies and devices to restore her hands and her life. So she can stop having to live life literally laying down: she’s got the fight, but she needs help
Fundraising Goals
The immediate and urgent need is to secure funds for therapeutic metal braces for Clara’s finger joints, to restore function to her hands and to reduce the pain of using them. At present even simple tasks like typing and cutting food cause her finger joints partially dislocate.
The second objective is to fund some of the therapies, treatments, medications and devices Clara needs to reduce her overall debilitating pain due to migraines and other chronic illnesses.
Finger Braces
There is more medical detail on Clara’s condition below but the need for the braces arises because her connective tissue and neurological system are affected so dramatically, even slight pressure causes her knuckle joints to “subluxate” (partially dislocate) and, yes, that is as painful as it sounds.
Clara is notoriously reluctant to ask for help and is fiercely independent, so she has tried, painfully, to fabricate her own braces out of a type of thermoplastic (Worbla) but it is not rigid or strong enough to protect her hands. She also tried scraping together savings to get some metal ones made at an amateur level but they weren’t supportive enough and didn’t fit properly.
She needs professionally fabricated metal braces. Without them the constant dislocation of her fingers is causing irreparable damage to her hands.
The cost of custom fabricated braces is $3,650 and approximately $1,800 of additional funds must be set aside to cover periodic adjustment and repair
Some (but not all) of the cost of the fabrication may be accepted and covered by Clara's private extended coverage. Funds raised here will be used for the shortfall.
If Clara can obtain the funds for the finger braces and the use of her hands again she can once again be able to enjoy her work, social life, and the creative arts she loves. You're giving her back the independence she is sorely missing.
Please help if you can.
General Pain Relief
Beyond the finger braces, the goal is to raise money to help cover the cost of therapies, medicines, and pain relief devices that are NOT COVERED by health insurance. We only ask for assistance for things that are financially out of reach. Things such as such as chiropractic, physiotherapy, and Registered Massage Therapy treatments, to help minimize the constant pain of this mysterious degenerative disease, and her migraine headaches, as well as counselling on how to cope with the constant pain, weakness and vertigo she suffers.
The following are some of the types of devices and services that Clara would very much appreciate being able to have to alleviate her pain. The prices are to give an idea of the scale of her needs. Less expensive options are being explored, though the possibility of a more expensive item/treatment could be chosen if found to be the most effective for relief. This list is a snapshot of a fluid situation.
• An adjustable “ROHO cushion” which is designed to prevent bedsores and other problems from prolonged sitting on her walker or other surfaces: $195
• Prescription sunglasses with filters for migraine causing light frequencies $450
• Fitted custom hinged knee braces – base cost $1700 per knee brace
• Core brace $38
• Sacroiliac brace $31
• Ergonomic office chair $610
• Folding Exercise Mat $50
• Wireless wearable TENS device $675
• Ultrasound therapeutic device $210
• Minimal costs per month for treatments and medications not covered by government or by her private insurance – comprised of:
-Treatments $1200
-Associated expenses, such as travel to treatments $500
-Medications $800
-Travel to appointments - $200
-Total $2,700 per month
• Air purifier for allergens $587
• “Curable” subscription $7 per month
Clara's History in Brief
Just four years ago, Clara happily used her hands to:
• Key in computer programs on her way to an honours degree in computer science;
• Support her body in gymnastics and aerial performances;
• Bake Christmas treats for her family and friends;
• Craft and sew fabulous clothes
• Care for Dewen and Arthur, the beloved cats she rescued and raised --- as well as doing all the all the day-to-day things we take for granted; such buying groceries, cleaning, getting dressed, opening doors, driving, opening a bottle of water, pouring tea and cutting her own food.
But in 2015 a sprained wrist, suffered in gymnastics, strangely failed to heal. This was followed by pain, diagnosed as tendonitis, in her shoulders. It was not long before these problems forced Clara to abandon the gymnastics she loved. She began to depend on sport braces for her pelvis (SI Joint), and for shoulder stability.
The degeneration continued and in 2016 Clara received a preliminary diagnosis of fibromyalgia. She also realized that the pain in her wrists, and increasingly in her fingers, meant she would not be able to pursue the career in computer science and programming which she craved and loved. While Clara maintained a secondary career in modelling, her life became increasingly devoted to a systemic search for treatments and therapies that could relieve her pain and give her back some of the life she had lost. She also sought ways to teach others the hard lessons she had learned about life with chronic and disabling pain.
2018 brought a diagnosis of hypermobility of a number of her joints, including her fingers, and with that a possibility that Clara suffers from Ehler Danos Syndrome (which is notoriously difficult to definitively diagnose).
One of the reasons this fundraiser is being managed for Clara is that she is such a brave trooper that she finds it hard to share her problems and especially hard to ask for help. But the fact is that, underneath her smile, she is suffering from finger pain, neck pain, back pain, pain in arms and legs, numbness/tingling, headaches, fatigue, cognitive impairment, in addition to symptoms involving cranial nerves, overload of the lymphatic system in the nasal mucosa and disturbance of the autonomic nervous system.
If this were not enough, the various medications have had some pretty horrible side effects. Clara has been beset by increasingly frequent and severe migraines, some lasting weeks are requiring hospitalization.
A few months ago, even navigating her own apartment unaided became too much and Clara is now forced to rely on a walker. But even in this, her spirit and humour have shone through. She initially named her walker “Dory” in honour of the unstoppable heroine of “Finding Nemo” and adopted Dory’s motto – “Just Keep Swimming”. Later, she decided that “Dora”, as in the “Dora the Explorer” series, was a better model for her brave adventures in the land of the disabled. Clara has the spirit to fight, but she needs help with the significant expenses for medicine, supplements, physio and chiropractic and other treatments, and for transportation to her appointments as she can no longer drive and her joint pain rules out the use of public transit.
Privacy and Accountability
Clara has asked Tim Bermingham, a lawyer qualified to practice in Ontario, to manage funds donated and to ensure that they are expended only toward the finger braces, and toward other pain relieving devices, therapies, medicines,or other services and goods that are intended to manage her symptoms and to reduce her suffering.
For the protection of the privacy of Clara and her health care providers it will not be possible to provide copies of receipts etc.
Thank you
No one wants to get sick. Clara certainly did not. But your gift will assist her on her journey back to independence and freedom.
Now imagine waking up to your regular day, but this day, something is different. Today you don't get the use of your hands, at least, not without debilitating pain. Try and consider how your life would be different without the full, pain-free, use of your hands.
This is Clara's reality.
We have a wonderful health care system in Canada, but it does not and cannot cover the cost of all the care and assistance that come with chronic pain and illness. Clara needs your help so that she can resume living a full life and be a contributing member of society, which she so desperately wants to do. If only 1% of the people who have enjoyed her creative projects donated the cost of a cup of coffee, these fundraising needs would be easily fulfilled.
Clara would not be turning to charity if it was not her last option.
She has tried everything she can think of including years on waitlists (as her health continued to deteriorate) and seeing 14 specialists, who have so far provided no real answers or help. She needs the resources to be able to afford new therapies and devices to restore her hands and her life. So she can stop having to live life literally laying down: she’s got the fight, but she needs help
Fundraising Goals
The immediate and urgent need is to secure funds for therapeutic metal braces for Clara’s finger joints, to restore function to her hands and to reduce the pain of using them. At present even simple tasks like typing and cutting food cause her finger joints partially dislocate.
The second objective is to fund some of the therapies, treatments, medications and devices Clara needs to reduce her overall debilitating pain due to migraines and other chronic illnesses.
Finger Braces
There is more medical detail on Clara’s condition below but the need for the braces arises because her connective tissue and neurological system are affected so dramatically, even slight pressure causes her knuckle joints to “subluxate” (partially dislocate) and, yes, that is as painful as it sounds.
Clara is notoriously reluctant to ask for help and is fiercely independent, so she has tried, painfully, to fabricate her own braces out of a type of thermoplastic (Worbla) but it is not rigid or strong enough to protect her hands. She also tried scraping together savings to get some metal ones made at an amateur level but they weren’t supportive enough and didn’t fit properly.
She needs professionally fabricated metal braces. Without them the constant dislocation of her fingers is causing irreparable damage to her hands.
The cost of custom fabricated braces is $3,650 and approximately $1,800 of additional funds must be set aside to cover periodic adjustment and repair
Some (but not all) of the cost of the fabrication may be accepted and covered by Clara's private extended coverage. Funds raised here will be used for the shortfall.
If Clara can obtain the funds for the finger braces and the use of her hands again she can once again be able to enjoy her work, social life, and the creative arts she loves. You're giving her back the independence she is sorely missing.
Please help if you can.
General Pain Relief
Beyond the finger braces, the goal is to raise money to help cover the cost of therapies, medicines, and pain relief devices that are NOT COVERED by health insurance. We only ask for assistance for things that are financially out of reach. Things such as such as chiropractic, physiotherapy, and Registered Massage Therapy treatments, to help minimize the constant pain of this mysterious degenerative disease, and her migraine headaches, as well as counselling on how to cope with the constant pain, weakness and vertigo she suffers.
The following are some of the types of devices and services that Clara would very much appreciate being able to have to alleviate her pain. The prices are to give an idea of the scale of her needs. Less expensive options are being explored, though the possibility of a more expensive item/treatment could be chosen if found to be the most effective for relief. This list is a snapshot of a fluid situation.
• An adjustable “ROHO cushion” which is designed to prevent bedsores and other problems from prolonged sitting on her walker or other surfaces: $195
• Prescription sunglasses with filters for migraine causing light frequencies $450
• Fitted custom hinged knee braces – base cost $1700 per knee brace
• Core brace $38
• Sacroiliac brace $31
• Ergonomic office chair $610
• Folding Exercise Mat $50
• Wireless wearable TENS device $675
• Ultrasound therapeutic device $210
• Minimal costs per month for treatments and medications not covered by government or by her private insurance – comprised of:
-Treatments $1200
-Associated expenses, such as travel to treatments $500
-Medications $800
-Travel to appointments - $200
-Total $2,700 per month
• Air purifier for allergens $587
• “Curable” subscription $7 per month
Clara's History in Brief
Just four years ago, Clara happily used her hands to:
• Key in computer programs on her way to an honours degree in computer science;
• Support her body in gymnastics and aerial performances;
• Bake Christmas treats for her family and friends;
• Craft and sew fabulous clothes
• Care for Dewen and Arthur, the beloved cats she rescued and raised --- as well as doing all the all the day-to-day things we take for granted; such buying groceries, cleaning, getting dressed, opening doors, driving, opening a bottle of water, pouring tea and cutting her own food.
But in 2015 a sprained wrist, suffered in gymnastics, strangely failed to heal. This was followed by pain, diagnosed as tendonitis, in her shoulders. It was not long before these problems forced Clara to abandon the gymnastics she loved. She began to depend on sport braces for her pelvis (SI Joint), and for shoulder stability.
The degeneration continued and in 2016 Clara received a preliminary diagnosis of fibromyalgia. She also realized that the pain in her wrists, and increasingly in her fingers, meant she would not be able to pursue the career in computer science and programming which she craved and loved. While Clara maintained a secondary career in modelling, her life became increasingly devoted to a systemic search for treatments and therapies that could relieve her pain and give her back some of the life she had lost. She also sought ways to teach others the hard lessons she had learned about life with chronic and disabling pain.
2018 brought a diagnosis of hypermobility of a number of her joints, including her fingers, and with that a possibility that Clara suffers from Ehler Danos Syndrome (which is notoriously difficult to definitively diagnose).
One of the reasons this fundraiser is being managed for Clara is that she is such a brave trooper that she finds it hard to share her problems and especially hard to ask for help. But the fact is that, underneath her smile, she is suffering from finger pain, neck pain, back pain, pain in arms and legs, numbness/tingling, headaches, fatigue, cognitive impairment, in addition to symptoms involving cranial nerves, overload of the lymphatic system in the nasal mucosa and disturbance of the autonomic nervous system.
If this were not enough, the various medications have had some pretty horrible side effects. Clara has been beset by increasingly frequent and severe migraines, some lasting weeks are requiring hospitalization.
A few months ago, even navigating her own apartment unaided became too much and Clara is now forced to rely on a walker. But even in this, her spirit and humour have shone through. She initially named her walker “Dory” in honour of the unstoppable heroine of “Finding Nemo” and adopted Dory’s motto – “Just Keep Swimming”. Later, she decided that “Dora”, as in the “Dora the Explorer” series, was a better model for her brave adventures in the land of the disabled. Clara has the spirit to fight, but she needs help with the significant expenses for medicine, supplements, physio and chiropractic and other treatments, and for transportation to her appointments as she can no longer drive and her joint pain rules out the use of public transit.
Privacy and Accountability
Clara has asked Tim Bermingham, a lawyer qualified to practice in Ontario, to manage funds donated and to ensure that they are expended only toward the finger braces, and toward other pain relieving devices, therapies, medicines,or other services and goods that are intended to manage her symptoms and to reduce her suffering.
For the protection of the privacy of Clara and her health care providers it will not be possible to provide copies of receipts etc.
Thank you
No one wants to get sick. Clara certainly did not. But your gift will assist her on her journey back to independence and freedom.
Organizer
Tim Bermingham
Organizer
North York, ON