Dan, six years, is one of the youngest fans of the Mighty River Run, due to the involvement of his parents Paul and Carol. In 2012, 2013 and 2014, Paul with Carol’s support, led Team Dan, a crew named in honour of their son. In 2015 the crew has since evolved and another client father has joined to make Team JadeDan.
Dan has been a Novita client since just after his first birthday, when he was diagnosed with congenital muscular dystrophy. His condition means he has been late to roll, sit, point and achieve other developmental milestones. As his mother Carol explains, “His muscles are weak and he will always be smaller than his peers. Dan does not talk, and communicates through key word signing and picture communication. He may develop some speech, but he also may not. This doesn’t prevent him from being funny, cheeky, astute or determined though!”
From Novita, Dan receives physiotherapy, occupational therapy and speech pathology services, as well as equipment such as ankle-foot orthotics to help him walk, supportive chairs, a larger-sized stroller, specialised eating utensils, a PODD (pragmatic organisational dynamic display) picture communication book, a standing frame, standing ladder, junior-sized commode, and small home modifications, like steps to enable him to wash his hands at the sink independently. “This degree of independence and inclusion is a big deal to a little boy,” Carol says.
Dan has also attended Novita’s Splashers hydrotherapy group, playgroup, Move and Groove physiotherapy group sessions, Chatterbugs speech pathology group sessions, Key Word Signing workshops, and made regular visits to Novita’s Toy and Resource Centre – “a wonderful place to visit”, Carol says. Carol has completed a Hanen speech course to learn how to work with Dan on communication, and attended seminars on educational pathways for children with additional needs. Importantly, Carol and Paul feel supported by Novita. “We have social workers, paediatricians and psychologists when we need them,” says Carol. “Novita representatives attend medical clinics with us at the Women’s and Children’s Hospital too, so that there is interconnection between institutions, and visit his childcare centre to support the staff there with equipment, eating plans and his education.”
Carol says Dan has racked up an “endless list of successes” with Novita’s help. “He has achieved a lot of milestones and goals, thanks to Novita’s therapists, as well as the fabulously resourceful librarians suggesting toys to engage him and extend his range of play and skills. He is constantly encouraged to interact with others in group therapy sessions that are designed for success, with therapists who engage him in such a personal, individual and loving way, praising him and acknowledging his every effort, so that he claps with delight and excited anticipation with each session, each song, each book and activity,” enthuses Carol. “Accordingly, Dan has a very apparent, positive attitude about Novita therapists visiting our home or his childcare centre – he starts grinning when we turn into the Regency Park Centre car park!”
Some of the most exciting moments for Dan and his family have been due to the simple things, which other families may take for granted. “We had a breakthrough during the Hanen program, when the techniques provoked Dan to say ‘mmm’ for ‘more’ – his first meaningful and intentional use of language beyond cries,” recalls Carol. “It’s hard to explain how good that felt.” Novita’s physical therapy led to a particularly special moment for Carol. “At three-and-a-half, Dan was able to reach his hands above his shoulders, and thus give me his first hug.” Like any four-year-old, Dan has been using his new-found independence in funny ways, too: “We love the cheeky look on his face when he attempts to ‘do a runner’ in his walker!” she laughs. “We have a little boy who has lots of people around him who love him, and are doing all they can to make him as independent as possible, and he goes to bed happy each evening, having gained a little more control of his environment each day.”
Looking ahead, Carol can see both good days, and not so good days, for her son. “Dan will need an electric wheelchair, a modified family car, a modified home for toileting and showering, help finding the right school, help at school, help dealing with the psychological reality of his limitations, as well as finding ways to achieve his desires,” lists Carol. “We, his family, will also need help to understand how to deal with him and to deal with how others react to him, every day.” Beyond that, Carol and Paul entertain the idea of their son having a Paralympic career in sailing and boccia. “I hope he likes those sports!” Carol laughs.
As dedicated participants, the Mighty River Run is a significant annual event for Carol and Paul. Carol describes the five days spent on the River Murray each year as their family’s own hydrotherapy. “I was fortunate to spend my childhood by the beach, but hadn’t had much experience of the Murray River, nor much appreciation of its special beauty,” says Carol. “A week on the river changed that. Now the river heals us with its waters. We spend the week being very happy, rather silly, quite wet (the water antics get more creative every year), very sated from both the excellent food and the new and renewed friendships, and reignited from having witnessed the good and selfless qualities that people still possess in our society.”
Your donation to the Mighty River Run means a lot to Carol, Paul and the rest of Dan’s family. “Through Novita, Dan is able to engage in activities that will extend his abilities, his independence, his social opportunities for meaningful and intimate relationships with others, his fitness, his sense of achievement, worthiness and self-esteem,” says Carol. “All these things will contribute to his having a longer life span. I plan on having my son around for a long, long time. I’ll be fighting down to the wire, and I’d appreciate the help. Supporting the Mighty River Run is a wonderful way to start.”