Although Adam continued to make good progress generally, his feet had notably regressed since his Ponseti treatment for talipes (club foot) between 2006 and 2008. Further surgery was proposed, but in an effort to avoid this, we contacted Naomi Davis, who is widely acknowledged to be the country’s leading expert on the Ponseti Regime. Based in Manchester, Miss Davis studied under Doctor Ponseti himself, and was recommended to us by Dr Harold van Bosse of the Shriners Hospital for Children in Philadelphia, who had read a post that we put on the TAG website forum requesting advice re alternatives to surgery.
Miss Davis began a further course of Ponseti treatment for Adam in the spring of 2009. This necessitated weekly trips from Redruth to Manchester and back for casting of Adam’s feet and subsequently the fitting of Boots and Bar. We explained the reasons for the trips to Air Southwest who have regular flights from Newquay Airport to many destinations, including Manchester, and they generously offered to provide discounted travel for Adam and his mother. The treatment has been very successful and, while further surgery cannot be entirely ruled out, Adam has progressed to the stage where he only needs to wear the boots and bar by night. By day, he wears supportive splints (see picture above), made for him by the team in Manchester and which have allowed him to wear regular shoes for the first time.
(Update 14th November 2011 - Sadly, Air Southwest no longer fly to Manchester from Newquay and we are having to make alternative arrangements).
In April, we finally managed to find an affordable vehicle large enough to accommodate Adam's wheelchair and the other specialist equipment he requires. We also needed a new car seat for Adam, as he has very poor circulation, particularly in his legs. The pressue of having his feet dangle from his regular car seat was causing purple bruising on his lower legs. Thanks to Adam's Fund, we were able to purchase a special needs car seat, designed for children who cannot sit unaided. The seat, which cost over £800, has full leg support which allows Adam's legs to rest, fully supported. Although the vehicle and car seat are making travelling with Adam much easier, there are still other difficulties to overcome. For example, we are currently having to use two metal ramps to get Adam's Snapdragon wheelchair in and out of the vehicle, which is a slow, difficult and occasionally painful business. We are therefore investigating the provision of an electronic lift which hopefully will make things much easier.
(Update - 5th June 2010: The lift has now been purchased and installed. For details, see our "2010 News" page).
In September, the St Austell Brewery Charitable Trust very generously financed the purchase of a manual wheelchair for Adam. The chair, a Cheetah model built by R82 UK Ltd, allows Adam to move around freely.
Adam has very good wheelchair skills for a child his age. He honed his skill in his Ready Racer. Purchased through the fund, the Ready Racer is a pre-wheelchair mobility aid designed to look like a sports car.
Adam loved driving around in his car and quickly mastered the basics of manoeuvrability.
As well as his wheelchairs, Adam now has a Mobile Standing Frame, provided by the NHS, which allows him to move around in an upright position. Adam spends up to two hours a day in his Stander as weight-bearing is the best way of developing his joint and bone strength and also has benefits for his chest.
He enjoys using it to gatecrash his brother’s bedroom to play table football and also to help himself to anything he can reach in the kitchen, or indeed the local Tesco’s. As with all parents, we are finding that there is a fine line between giving Adam the chance to explore things for himself and keeping him safe.
During 2009, the fund was used to pay for two further assessments for Adam at the Brainwave Centre in Bridgwater. He is clearly making progress and can now sit unaided for very short periods of time. His exercise regime has been tailored by the Brainwave physiotherapists to target specific muscles to help him progress further.
In September 2009 we finally moved from our house in Redruth (after over two years on the market) and, following a few weeks staying with family, moved into a three-bedroom bungalow.
Our new home, on the outskirts of Redruth is much easier for Adam to get around and is also easier on those of us who previously had to carry him upstairs frequently. Cornwall Council have arranged for ramps to be installed at the front and Adam is now able to leave the house in one of his wheelchairs.
We were saddened to learn that Dr Ignacio Ponseti, who developed the Ponseti method of treating talipes, passed away on 18th October 2009, aged 95. His pioneering work has benefited thousands of children around the world, and will continue to do so in the future thanks to the many consultants he trained in his technique, including Adam's consultant, Naomi Davis.