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The Power of Networking

Evan and I are the parents of Joseph.

Joseph is 28 years old and has DiGeorge Syndrome, which is a genetic disorder. The DiGeorge syndrome caused Joseph to be born with a heart defect. The medical professionals determined that Joseph's heart defect was a severe case and Joseph was not expected to live for more than 5-6 yrs. At the time the doctor's informed us that it was not possible to perform corrective surgery.

As a family our entire focus revolved around Joseph's physical needs and we were determined that he would survive. When Joseph reached the age of 6 years, the doctors were able to do corrective heart surgery. Joseph had subsequent heart surgeries at age 16 and again at age 27.

We always suspected that Joseph had a mental/cognitive disability but did not know what. When Joseph had his second heart surgery at age 16, Children's hospital conducted genetic testing and found that Joseph had a disorder called DiGeorge syndrome.

From birth to age 19 we as a family were Joseph's sole supports. We were never informed that support was available. We struggled financially/emotionally and physically in our commitment to maintaining Joseph's well-being. Fast forward to September 2012; Joseph attended St. Paul’s Hospital for his 3rd heart surgery for valve replacement. Joseph had been receiving very limited support from Community Living BC since age 21, without much success. Joseph's life had been on a downward spiral for close to 6 months, mainly due to inadequate support from CLBC.

Frustrated and uncertain of what to do, Evan found by accident the website for BCACL, now known as Inclusion BC. Evan contacted Inclusion BC and discussed our son's predicament. Inclusion BC successfully negotiated much needed supports for Joseph and continues to do so.

We developed a good working relationship with Inclusion BC in the lower mainland. As a result we attended a Values Vision Action workshop in Maple Ridge last year. At the workshop we listened to stories of people who overcame the obstacles of care related to children with special needs. The workshop allowed us the opportunity to engage with people from across Canada. We gained incredible insight into the power of networking and that there truly is strength in numbers when supporting our children. We came away from the workshop inspired and with a renewed sense of determination.

Currently we are working towards Joseph being supported by the HOMES society in Abbotsford BC. Inclusion BC has been integral to the process of securing Joseph's future and ensuring that he has a good quality of life.

Jo-Ann and her husband have two children, Joseph and Jordanna; and have lived in Prince Rupert for the past 25 years. An outdoor oriented family, they enjoy hiking to their cabin in the mountains. Much of their time is devoted to their son's needs and well-being.

This story originally appeared in the Coming Together newsletter. Download this and other issues here