Ontario teen struggling for life against Ehlers-Danlos Syndrome

Brooklyn Mills

Ernest Dempsey — Two years ago, life came down almost suddenly for an Oakville Trafalgar High School student named Brooklyn Mills. That morning in October 2009, 16-year-old Mills woke up to a severe lower back pain. Driven into the medical system for diagnosis, while undergoing hospitalization and extensive medical testing, it was found that she suffered from Ehlers-Danlos Syndrome (EDS), a genetic disorder of connective tissue that seriously affects joints and blood vessels, weakening the muscles and making the patients vulnerable to infections.

Life became a struggle for survival as Mills had to miss school and was confined to a wheelchair, while her twin brother graduated from high school in June. Being under the age of majority, she was not allowed to enter intensive pain management programs. While the Mayo Clinic in Minnesota did agree on letting her participate in an intensive pain-management program that didn’t include taking any narcotic drugs, the nearly $50,000 cost of treatment was denied by the Ontario Health Insurance Plan (OHIP). The fear that it would boil down to money came true. Life could be better, but somebody had got to pay for it.

One of the great examples set in Mills’ case was seen in February 2011 when her family and friends hosted an entertainment-and-auction show to gather proceeds for Mills’ treatment. Mills’ mother Rebecca Mills remembers it as a wonderful support initiative for her daughter.

“It was incredible,” she says. “We had over 700 people participating and got $32000 in fundraising.”
The event made Brooklyn Mills’ admission into the narcotic-free pain management program possible. Though it worked for her for a short while, and she was able to walk too, she relapsed in about a month, around April/may 2011. The Mayo Clinic couldn’t do anything about it anymore. The Mills had to return to Canada and admit Brooklyn to a hospital in Toronto for 8 weeks. She had to be in a wheelchair when moving and she had to be fed via a feeding tube. Her condition appeared hopeless. But her parents wouldn’t give in; for them, hope floated about in each breath.

As Brooklyn’s case was sent to a specialist in Maryland, US, the Mills were told that their daughter had brainstem/spinal issues that needed surgical treatment. Brooklyn was moved to Maryland for treatment where she had four major surgeries involving her brainstem/spinal cord, and a few minor ones, in October. While she is healing from surgeries, Brooklyn can now walk a little, and her psychological condition is getting better too.

“It may be 4 to 6 months that she heals from surgeries,” told Rebecca Mills. “There was a time when she went almost blind and her limbs would go numb, losing sensitivity to touch. But she is gradually getting better, though ESD is likely to stay with her for long, for the kind of disease that it is.”

A major part of the trial for the Mills is the issue of treatment costs. While the community as well as public has been very supportive of the family, the Ontario government still has to decide whether it will bear the costs incurred by the girl’s treatment in the US. Rebecca Mills says that they do need money for their daughter’s treatment but they are not considering giving a public appeal for funds until they learn from the Canadian government whether and how much financial support it can offer.
“All we need for now from the people is prayers,” says the mother.

Meanwhile, as Brooklyn Mills struggles to get her life back, caring people and groups are supporting a petition asking Ontario’s health minister to cover Brooklyn’s medical care for EDS.