In January, we hired a beach wheelchair for a few days and took Adam out and about in Cornwall, including a trip along Portreath Beach. The rugged Hippocampe chair coped exceedingly well with the beach and Adam loved being able to go into the surf.
The Hippocampe can be hired from Cornwall Council for a small charge. See the Council’s website for details.
Since birth, Adam has been having regular treatment for his bilateral talipes (clubfeet). Early in 2014, however, it became apparent that Adam’s feet were once again losing correction and the decision was made to undertake a further series of corrective casting.
For several weeks, Adam’s legs were encased in plaster casts which were changed every week, slowly changing the shape and position of his feet. To ensure the feet remain still throughout the treatment, the casts covered both legs in full. This technique, known as the Ponseti Method, is highly effective generally but less so for Adam, as he has particularly complicated feet. Nonetheless, his feet have regained some correction and it is hoped that with the use of foot splints, this correction can be retained.
Now that his casts have been removed, Adam has resumed hydrotherapy, which he attends once a week in the Hydro Pool at Curnow School in Redruth.
The therapy helps strengthen his muscles and improve his circulation. Adam really enjoys it although it leaves him (and his mother) exhausted.
Adam has recently become fascinated by the computer game Minecraft and spends many happy hours both playing the game himself and also watching his brother, William, playing online with friends. He is also, as any Minecraft fans might expect, a huge fan of the phenomenally popular YouTube video series featuring the Minecraft adventures of Stampy Cat, L for Lee Bear and iBallistic Squid, as well as those of Dan from The Diamond Minecart, featuring the enigmatic Dr Trayaurus.
Adam plays the pocket version of Minecraft on the iPad. His creativity is impressive but lacks order. Consequently, his Minecraft world is a strange, surreal landscape, full of random doors, paintings on rocks, deep and twisting holes, underground pigs, lava pools and waterfalls.
We have seen a marked improvement in both his dexterity and his concentration levels since he started to play the game. Emulating Mr Stampy Cat, Adam often offers a running commentary, which has increased his vocabulary. He also shows a notable interest in playing with physical building blocks, which never seemed to interest him before.
On 23rd August 2014, Adam and his parents took to the skies over Cornwall with a flight in a light aircraft organised by the Bader Braves, a branch of the Douglas Bader Foundation.
The Douglas Bader Foundation aims to promote the welfare of those without one or more limbs or who are otherwise physically disabled. It is named after Group Captain Sir Douglas Bader, the famous RAF pilot who served with distinction during World War 2 despite having had amputations on both legs following an air crash in 1931.
The Bader Braves support children with limb loss and other physical disabilities by offering unique experiences and opportunities to improve life skills and boost confidence. Adam’s flight took place during one of their popular Young Aviator Days and Adam was one of several disabled children who enjoyed personal flights that day. Adam enjoyed his flight immensely and was particularly excited to see Cornwall’s iconic Eden Project from above.
As well as the flight, the day featured displays from pilot Rob Mott in his Christen Eagle 11 aerobatic aeroplane and a Search and Rescue Sea King helicopter from 771 Naval Air Squadron based at RNAS Culdrose. Adam also got to go for a drive in a vintage car. We all had a wonderful time and would recommend the Young Aviator Days to all families with disabled children. Check the Bader Braves website for full details.
Following a fund-raising bingo evening and a generous personal donation (see 2014 Fundraising for details), we were able to purchase a new bike for Adam, to replace his original one which he has outgrown. The new bike is, like the old one, a Tomcat Trike which allows him to exercise his legs or to free-wheel if he is tired. The bike can be steered via a handle at the back.
As with all items purchased with assistance from the Fund that Adam outgrows or can no longer use, we passed his old bike to another family with a disabled child so that it could continue to be put to good use. Noah was delighted with his “new” bike and was keen to ride it immediately. On the way home after collecting it from us he insisted his mum went out to buy him a helmet and horn.
In November 2014, Adam’s long-mooted spinal surgery finally took place. The surgery, to address a severe scoliosis (spinal curve), was undertaken by Mr Ian J. Harding BA FRCS (Orth) and his team at the Bristol Royal Hospital for Children.
The operation, which took over 4 hours, involved the insertion of two “MAGEC” rods into Adam’s back on either side of his spine. “MAGEC” (Magnetic Expansion Control) rods are around half a centimetre in diameter and made of titanium. The rods were screwed into Adam’s spine, top and bottom, to brace it as he grows.
The surgery went well but Adam was very tired and sore for some days afterwards. He was on a high level of pain medication throughout but coped exceedingly well, although he missed his brother and grandparents terribly. Fortunately they were able to visit him at the weekend, and at other times they kept in touch via Skype.
After a few days, Adam was well enough to sit up and take short trips down the hospital corridor, where he was delighted to find a large statue of Gromit the Dog, of Wallace and Gromit fame. Wallace and Gromit’s Grand Appeal raises money for the Bristol Royal Hospital for Children and has raised over £27 million since 1995 to support a range of projects at the hospital.
The Gromit statue was one of 80 that were individually decorated by famous names from the world of animation, art, fashion, film and music. This particular statue, “Stats The Way To Do It, Lad!” was created by Aardman Animation Senior Designer Gavin Strange. The statues were individually auctioned in October 2013. The total raised, shown as £3.8 million on Gromit’s collar tag, has since been revised upwards to over £4.5 million.
Adam remained in the hospital in Bristol for ten days before being discharged. He was transported home in an ambulance as he was unable to sit upright for the journey and also to ensure that his back remained straight at all times as, although the rods themselves are very strong, the screws attaching them to the spine can break or loosen due to sudden falls etc.
Adam’s back is clearly much straighter since the operation and although there remains a degree of scoliosis, Mr Harding advised that the surgery had achieved a higher rate of correction than he had anticipated. Before surgery his curve measured over 100 degrees, it has now been reduced to 50 degrees. We would like to thank Mr Harding and the doctors, nurses and staff at the Bristol Royal Children’s Hospital for the excellent care and treatment that Adam received.