A family with strong South Canterbury connections will be hoping for a great response to a fundraising garage sale this weekend.
The Lions Club of Timaru Suburban Charitable Trust is holding a community garage sale on Saturday to raise funds to support Rett syndrome therapy.
It is a cause that means a lot to former South Canterbury couple Kendal and Alan Robson, whose 3-1/2- year-old daughter Biffie has been diagnosed with Rett syndrome, but has shown promising improvements from therapy at The Centre of Movement in Australia.
Rett syndrome is a rare genetic neurodevelopmental disorder that primarily affects girls, leading to severe impairments in language, motor skills and cognitive abilities.
The family currently lives in Rolleston, but is about to move to Lincoln, and Mrs Robson’s parents, John and Jenny Dewar, have recently moved from South Canterbury to be closer and provide support.
The family has travelled to Australia three times so Biffie could have therapy at the Centre of Movement.
At $9000 for therapy, and air fares and accommodation costs as well — and therapy recommended every six months — it has been a significant financial outlay.
A Christchurch centre is soon to open, and Mrs Robson said that would make a huge difference to the family, and others in New Zealand who had children with Rett Syndrome.
‘‘Alan will be able to keep working, and we can sleep in our own beds.’’
Biffie was born healthy, and hit all her milestones, but at about 13 months, Mrs Robson said she started losing hand control, and regressing, and was eventually diagnosed with Rett Syndrome at about 16 months.
While it was heartbreaking news, it was also a relief to know what they were dealing with.
Biffie had been going to preschool before her diagnosis, so the preschool had learned navigating life with a child with Rett Syndrome.
Mrs Robson said in some ways it was similar to the newborn stage carrying on and on — Biffie was non-verbal, sleep could be an issue and digestion issues were also common with the syndrome.
Good routines, preparation and planning are crucial to navigating life with a child with Rett Syndrome.
The community garage sale will be held in Orbell St, Timaru, on Saturday, October 4 from 9am to 3pm.
