WRITTEN BY- The Sens Foundation (Stefania Allevato)
September means back to school and time to return that stack of empties in your garage in support of Roger Neilson House. Roger Neilson House is an eight-bed home that provides comprehensive pediatric respite and palliative care programs in collaboration with the Children’s Hospital of Eastern Ontario’s palliative care team.
Roger Neilson House helps kids with life-limiting illnesses live life to the fullest. The Gofton family is indebted to the home since both children, Aislinn, 17, and Tait, 14, have a rare genetic degenerative condition. It’s so rare – only 12 to 14 people in the world have it – that it has no name. Over time, the condition has robbed them with the ability to speak, eat, walk and ultimately breathe. Aislinn and Tait are now quadriplegic and dependent on feeding tubes. Tait is also on a ventilator to support his breathing.
The Goftons were referred to Roger Neilson House almost 10 years ago and since then have used the wide range of services that the home provides to support Aislinn and Tait’s progressing and complex medical needs.
“Roger Neilson House provides medical care, emotional counselling, parent support groups, respite and pain and symptom management support,” said Emma Gofton, Aislinn and Tait’s mom.
“It has given us and our kids a community of their own – their friends hang out there and they have true peers.” Gofton goes on to say, “Roger Neilson House plays an evolving and anchoring role in our lives. We have a community and an extended family there and it enriches the lives of everyone that knows and loves our kids.”
Initially, it was suspected that the children had cerebral palsy. They learned to walk with the aid of a walker and were able to eat, breathe and talk. As the years progressed motor function and other skills were lost then genetic testing confirmed that it wasn’t cerebral palsy. As the children got older their need for care shifted and became more demanding to the point where Gofton, an obstetrician gynecologist, stopped working in order to accommodate Aislinn and Tait’s appointments and medical needs.
“My life with the kids influenced how I practiced, but even more so has changed how I view life and living it,” said Gofton.
Over the years, the Goftons have used the gamut of services provided by the home – respite, counselling, pain and symptom management and now, end-of-life care. Although Tait is the youngest, his condition is progressing faster compared to his sister.
Tait is described as “actively palliative”. Roger Neilson House supports the family holistically through this difficult time. However, Roger Neilson House goes beyond the serious side of palliative care. Tait recently organized an event for 75 people, including friends and family, with the support of the home. This event provided Tait with the opportunity to tell his loved ones how much they meant to him and to say goodbye.
The home’s philosophy of celebrating life extends to helping families attend concerts, recreational programs, Ottawa Senators games and kids can even have sleepovers without worrying about accessibility and cost.
“When people hear our story, they hear sadness and pain, but there’s great joy and beauty in these children’s lives because of Roger Neilson House. It has added quality to our lives and has become our second home,” said Gofton. “We’re very grateful to Roger Neilson House for all that they do and so thankful to the Ottawa community for supporting them.”
The Returns for Roger Neilson House runs September 6 to 8, 2019. Bring your empties to any Beer Store in Eastern Ontario to help support local kids and families.
