For 14-year-old Claire Connell to leave the house, her family has to physically carry her to the car then transport her in an adult pram, which she has almost outgrown.
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Claire suffers an uncontrolled form of epilepsy called Lennox-Gastaut syndrome. While she recently acquired a brand new wheelchair through the NDIS after a two year wait, her family’s current car is not able to transport it.
“It is exhausting carrying her,” Claire’s mum Susie Lane said. “It must hurt her.”
The family is looking at a new van that can lift and fit the wheelchair. But the wheelchair access needs to be close to the front in case Claire suffers a seizure and Susie has to pull over and care for her, and the family also want a van big enough to fit their other four children as well.
For the right vehicle with those modifications, they’re looking at about $40,000.
The family has pooled their savings together, and plan to sell their current van, but they’ve put the call out for help to reach the final figure.
Susie’s husband Andrew works full-time, but Susie has had to take a year off from her job to care of Claire so they are unable to get a loan.
To help their plight, a group of Susie’s friends has come together and organised a winery tour event to help raise funds for the much-needed van.
Susie said she was humbled by the “thoughtful and kind” gesture that she said would change Claire’s life.
When the family go out to lunch or dinner, Claire and Susie currently have sit at the end of the table together. Claire’s pram fits at the table on an angle and is not high enough for her to see anyone.
But her wheelchair is height-adjustable and can sit upright at the table with everyone else.
“It’s much more inclusive,” Susie said. “It gives her so much more support and freedom.”
This isn’t the first time Susie and Claire have faced struggles just trying to go out in public. The Mercury first met the family when Stockland Green Hills installed a new adult change room after hearing Susie explain what it took simply for her daughter use a public bathroom.
The winery tour event is on March 17. For more information visit the Facebook page Wheels for Claire. Susie has also set up a GoFundMe page.
Sage Swinton
Sage Swinton is a news reporter who was born and bred in the Hunter. She has been with the Newcastle Herald since June 2020, and covers Newcastle council as well as other general news.
Sage Swinton is a news reporter who was born and bred in the Hunter. She has been with the Newcastle Herald since June 2020, and covers Newcastle council as well as other general news.
