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THURSDAY JUNE 9, 2022
Celebrating Life - Your Way
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JUNE 9, 2022
Walk for Summer
By Mary Anne Gill
Summer Mudford is one in a million, literally. Her parents Vanessa and Ray of Cambridge say their beautiful 8-year-old daughter is the only child in New Zealand with Batten Disease, a fatal inherited disorder of the nervous system. Today is International Batten Disease Day and the Mudfords are embarking on a three-day awareness campaign, so the Cambridge community knows more about “this horrible, cruel terminal disease”. The campaign culminates on Saturday with a 5km run/walk at 10am using the same route as the Cambridge New Zealand parkrun – starting and finishing on the Te Awa River Walk from just below the Velodrome. It was in July last year that Vanessa, Ray and Summer’s lives changed forever. Her parents noticed something not right with Summer’s right eye – it was moving outward for no apparent reason. So, they took her to an optometrist who prescribed spectacles for her, but they did not help. She was unable to focus and kept falling. She was referred to John Dickson, a consultant ophthalmologist at Waikato Hospital. Within minutes he knew the problem was not with Summer’s eyes, but something more serious. Doctors told Vanessa and Ray there was a 97 per cent chance Summer had a brain tumour but on September 3 – her eighth birthday – a magnetic resonance imaging (MRI) scan revealed it was Batten Disease. Eventually Summer will go blind, develop dementia and lose the ability to walk, talk and communicate. There are 13 types of the disease – Summer has CLN1, or Infantile Batten Disease. There is no cure and life expectancy is short. Her eyesight has already diminished – she has 1:60 vision – making her legally blind. She goes nights without any sleep and the first subtle signs of dementia have started, mostly in the evening. “Summer is a bright caring little girl who loved to see
people smile. She has said from an early age that seeing people smile makes her heart sing,” said Vanessa. “It’s like Benjamin Button, she got to eight and everything crashed,” said Ray who has himself had to deal with multiple sclerosis (MS) which has robbed the former Tokoroa truck driver of the ability to work. While both are neurological disorders, doctors say there is no link between Ray’s MS and Summer’s Batten Disease, which researchers nonetheless think is an inherited disorder. “I know what it’s like to go through what she is,” he said “but it’s devastating to see in someone so young. “She’s always been an old soul; she loves people and animals. She is definitely our little sunshine.” Ray gets frustrated at the lack of help the family get from the health system. They have had to do much of the research themselves even working out Summer’s dietary needs which now include expensive supplements. There is so much they do not get told. Recently Vanessa rang the doctor when Summer experienced brief, sudden lapses of consciousness. She was told they were absence seizures – a common Batten’s symptom. “We’re not taking anything away from other illnesses but if this was cancer or something, help would be coming from everywhere,” said Ray. Researchers at Otago and Lincoln universities have bred sheep with Batten Disease to trial treatments, including most recently gene therapy. This work will lead to clinical trials but not soon enough for Summer, Continued on page 2 Summer Mudford with Mickey, her pet chihuahua.
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Tests are back Driver testing services returned to Cambridge today, after a gap of seven years. Testing also resumed in Matamata. The move was welcomed by the Cambridge based owner of Brighteye Driving School, Sheryl Moffat, who said it had been difficult and costly for young drivers to get to testing sites. Waipā mayor Jim Mylchreest said he would “happily admit” to having lobbied for the service to return. VTNZ Operations support manager Rachael Jobson said online bookings were open for all practical driving tests at the VTNZ Cambridge site on Lake Street. “Initially there will be one part-time driver testing officer working three days a week, but we expect to increase capacity over coming months,” she said. VTNZ says it is working with Waipā District Council and their landlord to provide appropriate parking for test applicants. There is roughly a 25-day wait period for driver tests in the Waikato.
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