Madeleine Murray is a nine-year-old little girl from Victoria, British Columbia. She has a very rare form of arthrogryposis that presents in her core, neck and limbs. Her condition is precarious due to two unsuccessful surgery attempts this past year, to manage a curvature of her spine known as kyphosis and scoliosis. As a result of these surgeries Madeleine's neck collapsed and her chin was fixed down to her chest, limiting her vision and making it difficult to look up and forward. Choking was a serious and life threatening concern. The longer they waited to correct her spine the greater the chance that the surgery would become more complicated and her condition could become permanent.
Madeleine's parents took her to a world-renowned deformity specialist in Florida, Dr. Feldman at the Paley Institute. On October 14, 2016 she had the first of two required corrective surgeries and has started four months of extensive rehabilitation, counselling and therapy to regain her strength and help her cope with the traumas of the past year. Before taking Madeleine to Florida, her parents, with the assistance of medical practitioners, sought advice from across Canada and the United States. They found Dr. David S Feldman, who has corrected and worked with many children who, like Madeleine, are living with arthrogryposis presenting in the core of the body. Dr. Feldman has a vast knowledge and understanding of how Madeleine’s underlying disease is affecting her skeletal makeup and overall health. Dr. Feldman’s team has a physical therapist trained to treat Madeleine’s condition. His practice is based on a team that works closely with him to help children with arthrogryposis achieve independent, meaningful, and successful lives.
The estimated cost for this life saving procedure and therapy is roughly $500,000 and that does not include travel, living expenses and lost wages for this family. Madeleine's parents have re-mortgaged their home, sold life insurance policies, and immediate family have helped with money to secure the first surgery she needed. They found out the afternoon before they left for Florida that MSP (British Columbia Medical Services Plan) has declined to help with any of the medical costs. The second of the two surgeries is scheduled in six weeks and has no source of funding.
There are very few surgeons in Canada who know how to perform the complex corrective surgery required and none with the experience to deal with the degree of difficulty that is presented by Madeleine’s arthrogryposis. The most specialized surgeon in Canada was unsuccessful. This surgeon had never before seen a case like Madeleine's and the results were disastrous. Specialized skill and experience with this rare disease is absolutely required to operate on a child with this condition. Madeleine has endured 11 surgeries thus far in her young life. Four of those were unsuccessful due in part to the related complexity of her disease.
The surgeon who performed Madeleine’s unsuccessful spine surgeries has refused to recommend that she receive MSP for her out of country surgery. He maintains that he can and should perform the corrective surgery. That was not an option Madeleine or her parents could consider after the pain and suffering of this past year. Her case highlights an enormous flaw in our system. The surgeon, who performed the unsuccessful surgeries that resulted in Madeleine’s extreme deformity, is the very person who must give the recommendation that would allow Madeleine to be funded outside Canada. The family is suffering extreme financial hardship because of the MSP decision and their suffering has been compounded by the fact that, without the MSP endorsement, no charities have been able to help even though Madeleine would most certainly be eligible.
Madeleine lost the ability to participate in the activities she once enjoyed before the two spinal surgeries this past year. She was able to attend school only part time because her neck became very sore if she didn’t rest throughout the day. She has lost an entire grade because she missed so much school. Her parents knew corrective surgery and effective post-surgical therapy and care was critical immediately to remedy her condition and help this formerly vivacious nine-year-old girl enjoy the quality of life she once knew.
Madeleine's family had prayed since Madeleine’s diagnosis at birth to find a place for her to get the care Dr. Feldman offers. Tragedy led them to his door. They had no option but to choose the very best in health care for their daughter. His surgical techniques will enable Madeleine to live a thriving, independent and functioning life. Madeleine will no longer need multiple surgeons who only specialize in one area. This disease is connected throughout her body and presents most significantly in her whole core, which is Dr. Feldman’s expertise. Anyone who knows this extremely brave young lady will agree, given the chance, she will do amazing things. Her story has the potential to touch many and help other children living with this condition. Both Madeleine's former and present GPs, who have cared for her throughout her life, strongly support the family’s decision to seek Dr. Feldman’s amazing team. One of the physicians went so far as to donate $1000 to kick-start a fundraising campaign to give her a chance to get the help she so desperately needs.
It took courage and a huge leap of faith to take Madeleine to experts in Florida.
The surgeries and resulting deformity have taken a physical and emotional toll on the entire family. Madeleine’s self-esteem has suffered greatly. The stress that the Murray family have experienced this year is beyond what most of us can imagine. The nightmare will continue until they are able to fund Madeleine’s second surgery in December.
The Murray family is filled with gratitude for the outpouring of love and support they have been receiving.