Nine year old Calem McDavid's mum Summer spent years lifting her son's folded wheelchair into the back of the family Tarago and was looking forward to the day the family could afford to modify the car to be wheelchair accessible. She was devastated when she found out the car was too old to be modified and it would cost her $40,000 to buy a specialised wheelchair-modified car.
"Calem has now grown out of his car seat and has to take a wheelchair accessible taxi if he wants to travel anywhere, including daily visits to Wilson Park School," Summer said. "If we didn't have taxi vouchers and the school's help to pay for them, we wouldn't be able to afford to go anywhere."
Now, along with two other local families with children in wheelchairs, Summer is hoping to raise enough money to make her and Calem's life a little easier through taking part in Riverwalk - an annual fundraising event held in Ballina by the Developing Foundation.
"We are fundraising for a car with a hydraulic lift or a flash cab with a fold-out ramp so Calem can sit in his wheelchair while we are travelling," Summer said.
While the car is on the top of the family's wish list, caring for Calem who has Athetoid Cerebral Palsy, Altomic Instability, Epilepy and other undiagnosed illnesses, brings with it many expenses, including speech and physio sessions, respite care and buying learning aids. Summer is hoping that the local community and local businesses can help out by either joining Calem's team for the five kilometre sponsored Riverwalk on September 16 or by donating to Calem's page on the Developing Foundation website (http://www.developingfoundation.org.au/family/calem) or by contacting Team Calem on Facebook.
This is the second year Riverwalk has been held at Missingham Park in Ballina and all funds raised provide support and care for families and their loved ones with brain injury or developmental disability. While 90% of the money raised by the family teams goes directly to the loved one with a brain injury, the balance is used to provide support services by the foundation to help all member families.
Riverwalk organiser Angela Mathew is also hoping to raise $40,000 through the event for her six-year-old son Ashton so the family can buy a modified vehicle and an elevator for their home.
"Ashton is one of only four people in the world with a rare non-hereditary genetic condition; a microdeletion on chromosome 14q12, which manifests in physical conditions like cerebral palsy," Angela said. "He requires 24-hour care and special equipment to assist with his mobility."
When he was first born, Angela was worried because Ashton had a big body and a little head.
"This happened because his brain didn't grow," Angela said. "It took the doctors six months to finally give his condition the name Microcephaly. At the time the paediatric neurologist told me and my husband, 'take him home and love him, that's all you can do.' But he's actually been making leaps and bounds every week and we are starting to really see his personality.
"We are hoping to raise $5000 in six weeks so we can at least buy a shower chair and commode. We may not get all the money we need this year but we'll keep fundraising over time. Our vision for Ashton is that he can live a fulfilling life with dignity choosing what he wears and hopefully one day saying 'I love you mum and dad'. These are the things people take for granted."
You can join Ashton's team or donate by visiting http://www.developingfoundation.org.au/family/ashton or look for Team Ashton Hayes on facebook. All donations of $2 or more are 100% tax deductible.
The family of seven-year-old Hayley Cameron from Goonellabah is also hoping to raise $16,000 through the Riverwalk event. Since Hayley was born, she suffered from seizures and was diagnosed with a genetic condition called Tuberous Sclerosis. Her family also struggles to cope with the costs associated with raising a child with high care needs especially with the ever-growing gap between government assistance and actual need.
Hayley is unable to walk or crawl, has very low muscle tone and has very limited use of her hands and arms. She is non-verbal and has a feeding peg for her nutrition and medications. She also has physical and developmental delays and requires the support of and prescription medications and still has breakthrough seizures. To support or donate to Team Hayley, visit http://www.developingfoundation.org.au/family/hayleyc.
According to Riverwalk organiser Angela Mathew, caring for a child with a disability is not a sprint; it's a marathon.
"Having access to respite and being able to care for them properly makes a world of difference," Angela said. "I hope that everyone will help out by taking part in Riverwalk - it's about giving back to your community and the feeling is magic. Not only are you are helping someone else, but you feel good about yourself. It takes an hour to complete the walk at a leisurely place and you can enjoy the beautiful bay on Sunday morning while breaking down barriers and meeting someone with a disability."
You can register online for Riverwalk at www.riverwalk.org.au or on the day from 9am. It costs $20 per family, $7 per adult or $3 for children and the walk starts at 10am followed by a free sausage sizzle for participants as well as musical entertainment.
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