Sydney's Hope
Donation protected
Sydney
At 19 years old, Sydney is a bright, beautiful, courageous, strong young woman. Sydney loves animals, and is particularly passionate about horses. Sydney also has Neurogenic Thoracic Outlet Syndrome caused by bilateral cervical ribs.
Neurogenic Thoracic Outlet Syndrome
Neurogenic Thoracic Outlet Syndrome (NTOS) is a condition whereby the nerves in the upper brachial plexus (neck) are compressed, resulting in nerve pain. NTOS is not common, occurring in approximately 0.2% of the population. The quality of life for those suffering from NTOS is profoundly diminished.
Previous Surgeries
Sydney has undergone 3 surgeries between 2015 – 2017 on her neck in an attempt to alleviate her pain due to chronic nerve impingement. Despite the gruelling experience of invasive surgeries with complicated recoveries, these surgeries have not gone far enough in lessening the constant pain from NTOS. It became evident that if Sydney’s NTOS was going to be successfully addressed, we needed to turn to a specialist in this uncommon, complex area.
Required Surgery
There are no NTOS specialists in Canada. Through extensive research, we have identified a specialist, Dr. Dean Donahue, who operates a Thoracic Outlet Syndrome clinic at Massachusetts General Hospital in Boston. This is one of the few TOS specialty clinics in the world. As this clinic is located in the United States, there is no medical coverage available, placing this surgery prohibitively out of reach financially. However, a solution is in sight. Sydney is maintaining hope. She accepts that more surgery is required. She is courageous, and she has more strength than we can imagine. Sydney's surgery is scheduled for May 22, 2019. The only barrier now is cost.
Cost
Our Goal is to raise $300,000 (CAN) to cover the initial required surgery and to ensure Sydney has funds to enable her to continue treatment at the clinic in Boston.
- Cost of Surgery and Hospital Stay $215,000
- Related Out of Country Costs $ 15,000
- Ongoing Care and subsequent procedures in Boston $ 70,000
Impact of NTOS on Sydney
Sydney’s constant pain has impacted all areas of her life. Pain reaches from her neck, down each arm, across the chest, and into her back. Sydney is significantly limited in her physical abilities, and performing routine daily tasks intensifies her already high level of pain. Sydney is reliant upon multiple strong medications to reduce her pain. The combination of pain and medication challenge Sydney’s ability to concentrate mentally. One of Sydney’s shining lights, though, is her service dog, Trooper. Trooper is Sydney’s constant companion. Trooper can open some doors, and carry some limited belongings, including Sydney’s medication bag. Trooper also places pressure on Sydney with his own weight in order to offer some limited distraction from her pain.
History of Sydney’s NTOS
Sydney’s symptoms began when she was 9 years old, where she would complain periodically about pain radiating down her right arm. Despite efforts to diagnose the unknown cause of this pain, Sydney experienced pain in increasing frequency and intensity over the next 6 years. In time, the same pain emerged down her left arm as well. Then, at age 15, Sydney’s NTOS diagnosis came following a fall from a horse during a jumping competition that resulted in a broken collarbone. Subsequent medical imaging identified that Sydney had bilateral cervical ribs, a hallmark of NTOS, and the structures responsible for her nerve compression. While this fall led to the diagnosis of NTOS, it also resulted in a significant increase to the baseline of the pain caused by it. Sydney has been experiencing a high level of pain, every day, ever since.
A Parent’s Perspective
Watching our child attempt to cope with unceasing pain, seeking to learn more about NTOS, and struggling to maintain hope, we have felt helpless to do the thing we most want to do – to protect our daughter from pain. That is perhaps a parent’s foremost drive – to protect their child from being hurt, to tell her that things will be alright – and to make sure they are. It’s this very drive, though, that keeps us pushing toward a solution for our beautiful little girl, a young woman now, with the rest of her life still before her. We have not let go of hope, and neither has Sydney. There is a pathway forward, but we need your help. We deeply appreciate your time, your compassion, and your hope for Sydney.
You can help Sydney by donating to this campaign through:
1. E-transfer to [email redacted]
or
2. Click the 'Donate' button on this page
or
3. Cash or cheque donation at 'NewsNow' in Grimsby; cash donation box also at check-out at Giant Tiger (Grimsby)
Sharing this Campaign:
Please take a moment of your day to share Sydney's story with as many people as possible. A quick email or post on Facebook / Twitter / etc. will make all the difference in creating a successful fundraising campaign for Sydney!
Below are some photographs of our beautiful, fearless daughter before she became sick...
At 19 years old, Sydney is a bright, beautiful, courageous, strong young woman. Sydney loves animals, and is particularly passionate about horses. Sydney also has Neurogenic Thoracic Outlet Syndrome caused by bilateral cervical ribs.
Neurogenic Thoracic Outlet Syndrome
Neurogenic Thoracic Outlet Syndrome (NTOS) is a condition whereby the nerves in the upper brachial plexus (neck) are compressed, resulting in nerve pain. NTOS is not common, occurring in approximately 0.2% of the population. The quality of life for those suffering from NTOS is profoundly diminished.
Previous Surgeries
Sydney has undergone 3 surgeries between 2015 – 2017 on her neck in an attempt to alleviate her pain due to chronic nerve impingement. Despite the gruelling experience of invasive surgeries with complicated recoveries, these surgeries have not gone far enough in lessening the constant pain from NTOS. It became evident that if Sydney’s NTOS was going to be successfully addressed, we needed to turn to a specialist in this uncommon, complex area.
Required Surgery
There are no NTOS specialists in Canada. Through extensive research, we have identified a specialist, Dr. Dean Donahue, who operates a Thoracic Outlet Syndrome clinic at Massachusetts General Hospital in Boston. This is one of the few TOS specialty clinics in the world. As this clinic is located in the United States, there is no medical coverage available, placing this surgery prohibitively out of reach financially. However, a solution is in sight. Sydney is maintaining hope. She accepts that more surgery is required. She is courageous, and she has more strength than we can imagine. Sydney's surgery is scheduled for May 22, 2019. The only barrier now is cost.
Cost
Our Goal is to raise $300,000 (CAN) to cover the initial required surgery and to ensure Sydney has funds to enable her to continue treatment at the clinic in Boston.
- Cost of Surgery and Hospital Stay $215,000
- Related Out of Country Costs $ 15,000
- Ongoing Care and subsequent procedures in Boston $ 70,000
Impact of NTOS on Sydney
Sydney’s constant pain has impacted all areas of her life. Pain reaches from her neck, down each arm, across the chest, and into her back. Sydney is significantly limited in her physical abilities, and performing routine daily tasks intensifies her already high level of pain. Sydney is reliant upon multiple strong medications to reduce her pain. The combination of pain and medication challenge Sydney’s ability to concentrate mentally. One of Sydney’s shining lights, though, is her service dog, Trooper. Trooper is Sydney’s constant companion. Trooper can open some doors, and carry some limited belongings, including Sydney’s medication bag. Trooper also places pressure on Sydney with his own weight in order to offer some limited distraction from her pain.
History of Sydney’s NTOS
Sydney’s symptoms began when she was 9 years old, where she would complain periodically about pain radiating down her right arm. Despite efforts to diagnose the unknown cause of this pain, Sydney experienced pain in increasing frequency and intensity over the next 6 years. In time, the same pain emerged down her left arm as well. Then, at age 15, Sydney’s NTOS diagnosis came following a fall from a horse during a jumping competition that resulted in a broken collarbone. Subsequent medical imaging identified that Sydney had bilateral cervical ribs, a hallmark of NTOS, and the structures responsible for her nerve compression. While this fall led to the diagnosis of NTOS, it also resulted in a significant increase to the baseline of the pain caused by it. Sydney has been experiencing a high level of pain, every day, ever since.
A Parent’s Perspective
Watching our child attempt to cope with unceasing pain, seeking to learn more about NTOS, and struggling to maintain hope, we have felt helpless to do the thing we most want to do – to protect our daughter from pain. That is perhaps a parent’s foremost drive – to protect their child from being hurt, to tell her that things will be alright – and to make sure they are. It’s this very drive, though, that keeps us pushing toward a solution for our beautiful little girl, a young woman now, with the rest of her life still before her. We have not let go of hope, and neither has Sydney. There is a pathway forward, but we need your help. We deeply appreciate your time, your compassion, and your hope for Sydney.
You can help Sydney by donating to this campaign through:
1. E-transfer to [email redacted]
or
2. Click the 'Donate' button on this page
or
3. Cash or cheque donation at 'NewsNow' in Grimsby; cash donation box also at check-out at Giant Tiger (Grimsby)
Sharing this Campaign:
Please take a moment of your day to share Sydney's story with as many people as possible. A quick email or post on Facebook / Twitter / etc. will make all the difference in creating a successful fundraising campaign for Sydney!
Below are some photographs of our beautiful, fearless daughter before she became sick...
Organizer
Heather Kiteley
Organizer
Grimsby, ON
