Following a highly successful few months of fundraising, detailed on our 2015 and 2016 fundraising pages, we took delivery of Adam’s new powered wheelchair early this year. The chair, a Permobil C400 Corpus 3G Lowrider, allows Adam a greater degree of independence than his manual chair, especially outside in terrains unsuitable or difficult for a manual chair to traverse.
Adam particularly likes to use his new chair to explore local Cornish attractions like Heartlands and Tehidy Country Park. It allows him to keep up with his able-bodied friends and means his parents and carers are no longer exhausted from pushing him over uneven ground.
Adam also uses the chair indoors and can be seen here perusing the toy aisle at a local branch of Tesco, possibly in preparation for his upcoming tenth birthday.
On 30th April 2016, Adam and his parents travelled to Land’s End to attend the official start of a charity run the length of the country by runner Mark Vaz. Mark, who has completed multiple marathons for charity, often on consecutive days, was running from Land’s End to John O’Groats to raise money for the Make a Wish Foundation, a charity dear to our hearts following Adam’s Wish Trip to Florida in 2011.
Before Mark set off, he presented Adam with the Monkey mascot he had been using. Monkey is now a favourite toy of Adam’s and often accompanies him on outings.
In June, Adam’s carer and friend Samantha Stephens married her fiancé, Talek Sowden, in Falmouth. Samantha is employed by Adam’s family through Cornwall Council’s Direct Payment scheme to assist with his care and support. Adam was delighted to be invited to her wedding and took great interest in planning his outfit, choosing for himself a light blue suit, waistcoat and purple bow tie. He looked quite the dapper gent.
Instead of buying wedding favours for their guests, the happy couple made a generous donation to Adam’s Fund. The day was hugely enjoyable and Adam had a lot of fun.
We would like to thank Talek and Samantha for their donation and wish them every happiness for their future together as husband and wife.
Adam still visits the Bristol Royal Hospital for Children every few weeks to have the rods in his back (inserted in November 2014 to correct his scoliosis) lengthened. There are, however, few public toilets along the route from his home in Redruth, Cornwall, to Bristol which have the hoist and bench that he requires. Adam’s mum, Rachel, therefore recently approached Cornwall Services in Roche, to enquire whether they would consider installing a “Changing Places” or “Space to Change” toilet, which would provide a facility with the equipment that Adam and many other disabled people require.
Cornwall Services responded very positively to Rachel’s enquiry and within a few weeks, their new “Space to Change” toilet was complete and open to the public. Adam and Rachel attended the opening ceremony which was covered by local media. They are pictured below with Alex Lawson, Manager at Cornwall Services.
Buoyed by the outcome of her request, Rachel has contacted other organisations and attractions across Cornwall to enquire about the possibility of them installing a Changing Places toilet. While there has been some interest, it is fair to say that no-one has yet shown the enthusiasm of Cornwall Services for the idea.
Rachel has been chronicling her ongoing efforts in a regular blog called Ordinary Hopes, which you can read here.
In June, Adam met with world-renown foot specialist Naomi Davies. Ms Davies is based in Manchester but was in Bristol attending a conference and graciously offered to meet with Adam in her lunchbreak. She saw him at the Bristol Royal Hospital for Children (BRHC), along with her colleague, Mr Guy Atherton, Consultant in Children’s Orthopaedics and Trauma at the BRHC. Unfortunately they advised that Adam’s club feet have regressed to the point where they will no longer respond to conventional treatment and will require surgery. We await a date for the operation.
Update: 16th May 2017 - Adam's foot operation is now scheduled for 6th June 2017.
On the subject of the Bristol Royal Hospital for Children, we were interested to learn that a curious mystery there was recently solved. There is an art installation outside the hospital, comprised of brightly coloured hoops on curved poles. The piece is called Lollypop-be-Bop and was designed by artist Andrew Smith. The piece is interactive, as people can light up the hoops by pressing buttons inside the hospital.
Late in November 2014, just a couple of days after Adam was discharged from the hospital following his back surgery, this plaque mysteriously appeared overnight next to the installation.
For anyone who doesn’t know, Quidditch is the fictional sport created by J K Rowling in her Harry Potter novels, which involves players flying on broomsticks throwing a ball (the “Quaffle”) through hoops on poles. The plaque was unofficial. Indeed it seems the hospital was not officially aware of its existence for well over a year. Now, however, it has been revealed as the work of Bristol University graduate Cormac Seachoy, who had simply wanted to make children at the hospital think the art piece was a gift from wizards. Sadly, Cormac passed away in December 2015 after being diagnosed with cancer, but hospital bosses have agreed to keep the plaque, described by J K Rowling herself as “one of the most beautiful Potter-related things ever.”
Like many children his age, Adam loves to spend time with his friends at the local skate park. Although his condition means that he cannot use a skateboard, he is more than happy to tackle the ramps in his wheelchair, particularly if his mum or friends lend a hand.
Unfortunately in August he had a slight accident at the park when his chair toppled over, resulting in him chipping one of his front teeth.
This required some dental work which, as a precaution, needed to be carried out under general anaesthetic. Early in December, therefore, he attended the dental clinic at the Royal Cornwall Hospital in Truro, where the tooth was repaired just in time for Christmas.
Almost two years on from Adam’s spinal surgery in November 2014, one of the most noticeable benefits has been a dramatic increase in his size and weight. At the time of his surgery, he was 8 years old yet weighed a lowly 19 kilograms (below, left). Now aged 10, he is far beefier (below, right - picture taken in September 2016).
It is believed that the support given to him by the spinal rods allows Adam to better digest his food, as well as meaning that he expends less energy supporting himself. Whatever the reason, he continues to gain weight. Fortunately the electronic hoists used to lift him in and out of his wheelchair at home have been tested to half a ton!
Update: On 2nd February 2017, Adam was weighed at 35.5 kilograms, which means he has almost doubled his body-weight in a little under 27 months.