Fundraiser for Sydney Gill's final surgery for NTOS.

Our 22-year-old daughter, Sydney Gill, has been living with debilitating chronic pain since she was nine years old and needs a life changing surgery not covered by OHIP funding. She has Neurogenic Thoracic Outlet Syndrome (NTOS), a rare condition where her nerves are chronically compressed by an extra set of cervical ribs in her neck. Sydney's NTOS is also bi-lateral - it's the same on both sides. For more than half her life she has dealt with intolerable pain radiating from her neck, down each arm, across the chest, and into her back which has profoundly diminished her quality of life.

 

There is new hope, but we need your help. After multiple neck surgeries here in Canada failed to help control the pain, and her doctors ran out of viable options, we knew there had to be a better future for our daughter. This led us to Dr. Dean Donahue at Massachusetts General Hospital and a surgery option that offered great success for NTOS sufferers. However, OHIP declined coverage leaving us facing 2 surgeries at an overwhelming cost of $300,000 each to give our daughter a life free of suffering.

 

In 2019, with the help of GoFundMe and the community we raised about 50% of the cost for her first surgery. Through that support, our savings, and remortgaging our house we pulled together the funds for Sydney to receive surgery on her right side. The surgery was a success - she finally had some relief. However, the condition on her left side continues to deteriorate and is ready for her next and final  surgery on December 1, 2021. We are reaching out to the community for help to fund this $300,000 surgery which will allow Sydney to finally look forward to a life free from chronic pain.

 

 

Sydney is a bright, beautiful, and courageous young woman. She loves animals and is particularly passionate about horses. Sydney recently graduated from high school, albeit 4 years behind her peers, a delay caused by years of treatments and surgeries. Sydney’s next, and final surgery gives her hope for her future and life beyond pain; hopes of university, a career, a family, and everything else a young woman dreams of.

 

Sydney’s Experience with NTOS

While Sydney's successful surgery in Boston in 2019 on her right side has yielded great relief and improvement, pain on her left side has been steadily increasing. This type of pain impacts all areas of her life. 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 maintain concentration. One of Sydney’s shining lights, though, is her service dog, Trooper. Trooper is Sydney’s constant companion. Trooper can 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. Trooper has been in hospital with Sydney before and after her surgeries, and he’s ready to be right there alongside Sydney again for her next and last surgery.

 

 

 

Previous Surgeries

Sydney has undergone 3 surgeries in Ontario between 2015 – 2017 on her neck in an attempt to alleviate her pain due to NTOS. Despite the grueling experience of invasive surgeries with long complicated recoveries, these surgeries have failed Sydney, resulting in rapid resumption of symptoms due to the inadequate removal of the structures responsible for the condition. Instead, Sydney was encouraged to seek support on how to integrate chronic, debilitating pain into her life – for the rest of her life. This was the result of the absence of NTOS specialists here in Ontario, and in Canada. 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.

 

In 2018, through our own extensive search, we located Dr. Donahue at Massachusetts General Hospital in Boston. Dr. Donahue is the Director of one of the largest TOS programs in the United States for the evaluation and treatment of this condition. More specifically, Dr. Donahue specializes in NTOS. On May 22, 2019, Sydney underwent surgery by Dr. Donahue at Massachusetts General Hospital. The outcome of this successful surgery has been an alleviation of the impingement on Sydney’s right side, resulting in a significant decrease in pain, and most of all, a renewed hope for her future.

 

A Parent’s Perspective

As parents we have struggled over how to best help our daughter cope with increasing pain, physical debilitation, and her questioning of hope for her future. Our journey through the Ontario medical system has been exhaustive, and sadly, has left Sydney in a state of permanent disability. We have questioned hope ourselves, but have maintained our resolve to continue doing all that we can for our daughter, deriving strength from her as she battles through each day, looking to us as parents for support and reassurance. Sydney is not giving up – we can’t give up.

 

We now find ourselves closer than ever before to Sydney’s NTOS being addressed once and for all. Sydney’s upcoming surgery with Dr. Donahue will set her on a course to recovery that will open her up to pursue the rest of her life to its fullest extent, and at 22, like any other young person, she can’t wait to get started.

 

Below are some photographs of Sydney, our beautiful, fearless daughter.