A plucky eight-year-old heroine with a poignant story will join more than 1 000 young entrants in the SPAR Little Ladies’ Race in Port Elizabeth next month.
Hope Jones is likely to complete most of the race in a wheelchair alongside her able-bodied competitors – a symbol of her remarkable spirit and will to beat the odds.
The 2.5km run on May 2 at Pollok Beach is a curtain raiser to the SPAR Women’s Challenge five days later.
Held for girls aged nine years and under, it has become a much-loved part of the event since it was launched exclusively in the Eastern Cape four years ago.
Just like the main event, the Little Ladies’ Race is a professional affair, with grand prizes, lucky draws, medals and a beneficiary.
This year, the Hope Jones Foundation will receive all proceeds raised from the race, said SPAR Eastern Cape marketing director Abri Swart.
The Jones family of PE started the foundation after their daughter Hope was born in 2008 with congenital myopathy, which affected all her voluntary muscles. The condition was so severe that she was unable to swallow at birth.
The foundation raise funds and source equipment to enable children with mental and physical challenges to reach their full potential, establish good working relationships with medical professionals and provide support, contacts and information for parents.
Hope’s parents, Gary and Deirdre, work tirelessly to raise awareness about disabled children.
“Hope has an unidentifiable myopathy which in essence is an extreme weakening of the muscles,” said Gary. “When she was born, she was unable to swallow or move any of her voluntary muscles, including those in her arms and legs.
“She also had a 50 per cent bilateral hearing loss and semi-clubbed feet. Two muscle biopsies were inconclusive or unidentifiable, not fitting any known myopathies on record.”
Despite her rocky start in life, Hope has made phenomenal progress.
Corrective surgery has enabled her to walk as normally as possible. She wears splints daily to keep her feet in the correct position, uses a standing frame at home and at Merryvale School and wears a brace to assist her core muscles.
“Her hearing has been completely restored after wearing aids for five years,” said Gary. “This cannot be explained medically, except that it is a miracle and we believe it is.
“Hope’s speech also suffered as a result of the hearing impairment, but this has progressed very well. She now says McDonald’s, Spur and SPAR with no problem at all!”
Cognitively, Hope cannot follow a normal mainstream school curriculum, although she is “pretty bright in many ways”, he said.
“This is one of the challenges we face as special needs parents – to find areas where she has strengths and to develop them accordingly.”
Gary said the issue of awareness was the most important aim of the foundation, as most people “have no idea of the challenges faced by disabled children and their families”.
This fact led to the establishment of the ABC4DBC Ambassador programme, which seeks to expose ambassadors to the world of disabled children and encourages them to champion their cause.
The foundation has 75 ambassadors in 10 schools throughout the city.
Gary, Deidre and their 17-year-old daughter Sarah – a Grade 11 pupil at Collegiate High School – will join Hope at the event.
“On race day, we would like all the girls to know that disabled children are in their community, need their support and, although different, are not ‘less’ than them,” said Gary.
“There is greatness in every person, if we only take the time to discover it.”
Read about the Hope Jones Foundation on www.thehopejonesfoundation.co.za.