Sometimes It Takes Only One Person to Create Significant Change!

Rebecca and Kris Mills inspired the charitable works of the Life of Children. That support is vital for the children with disorders like Ehlers Danlos Syndrome.

Oakville Beaver  By John Bkila  

Rebecca Allen_1Sometimes it takes only one person to create significant change — like Oakville’s Brooklyn Mills who inspired the creation of the ILC foundation.   Improve the Life of Children (ILC) has a mission to help children and adolescents with chronic pain disease who fall through the cracks when it comes to getting the treatment they so desperately need.

“Rebecca and Kris Mills (Brooklyn’s parents) inspired the charitable cause of the ILC in wanting to ensure no other family would suffer as they have,” said Sandy Smeenk, ILC co-founder, executive director and trustee. Smeenk cites gaps in the health-care system and  community services for peer-support programs for youths.

As a Grade 12 student at Oakville Trafalgar High School, Brooklyn was in competitive cheerleading, able to perform back handsprings and flips on command, In October 2009, she woke up with excruciating lower back pain and in a few short months was taking strong pain medication, confined to a wheelchair and eventually a hospital bed that was brought into her living room.

After seeing numerous doctors and specialists, and hospitalized several times from the pain, Brooklyn was diagnosed with Ehlers-Danlos Syndrome (EDS), a rare condition affecting only one in 5,000. It is marked by the inability of the collagen in the body to hold itself together — May was EDS Awareness Month.

Dislocations and pain are commonplace with the connective tissue disease, which is difficult to diagnose, treat and care for, said Smeenk.  Brooklyn’s parents were unsuccessful in their search for treatment in Canada and as a last resort, paid $50,000 to send their daughter to an intensive program at the Mayo Clinic in Minnesota where she stayed for more than a month — the program eventually helped her walk again and return to school.   However, the Mills have been twice denied reimbursement for the treatment by Ontario’s health system.   Smeenk says when she saw the struggles of the Mills’ family, she and Rebecca founded ILC.

“For the children who live with EDS, not only do they fall between the cracks of care, they at times get caught up in three ministries of government services — health, education, and child and youth services,” Smeenk said. “When a child lives with chronic pain illness where the medical system struggles to diagnose, treat and care for them, fear and anxiety exasperate the pain, leaving them with feelings of isolation and depression.”

The ILC foundation received charitable status in February 2012 and its programs support children aged 11-29 — and their families — who suffer with complex chronic pain and illness.  ILC has a peer support program and offers one-on-one support to navigate through the healthcare system.

“ILC is extremely pleased to have been able to facilitate better care outcomes through our peer-to-peer support network for a number of the ILC client families through collaborations between Oakville Trafalgar Memorial Hospital, doctors at our satellite children’s hospital, McMaster Children’s Hospital and those on our network that are international experts,” Smeenk said.

“These physicians have a great dedication beyond what any other doctor has extended to these patients, to help them have a better quality of life and to have hope. And, ILC is very proud to have inspired these outcomes.”

The ILC foundation has helped more than 100 families through its support programs — it is also known for annually organizing Oakville’s Largest Rock n’ Roll Party fundraiser.

In December 2012, the foundation teamed up with McMaster University to hold a 21-day rehabilitation program for teens and children with chronic pain and in May of last year, received a one-year, $50,000 grant from the Ontario Trillium Foundation.”

Parents and the doctors can make a big difference in the support of children with EDS 

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