JANUARY - EASTER 2009

Marshall celebrated his first birthday on 22 December 2008. He and his family enjoyed a lovely Christmas Day. “Marshall wore a little Santa Suit”, said his Mum, Stephanie, “He looked so sweet.”

When Marshall woke up on Boxing Day morning, Stephanie noticed a tiny rash on his forehead. Worried that it was something serious, Stephanie and Moss, Marshall’s Dad, immediately bundled him into the car and drove to Treliske Hospital in Truro.

At Hospital Marshall became more listless and was developing a rash all over his body. The medical staff immediately rushed him into intensive care. Doctors confirmed Stephanie and Moss’s worst fear - he had indeed suffered an attack of Meningitis.

Doctors fought for over four hours to save Marshall’s life. His vital organs failed on two occasions. Said Dr Thys De Beer, Head of Intensive Care at Treliske Hospital, “Marshall is the sickest child I have ever seen. His survival is almost miraculous.”

Marshall was transferred to Bristol Children’s Hospital which has one of the UK’s leading specialist units in treating Meningitis in very young children. Marshall’s vital organs failed again and, once more, medical staff battled for hours to save him.

Over the next few weeks tests confirmed that Marshall had escaped brain damage and that his sight and hearing had not been impaired, however, Doctors had to tell Stephanie and Moss that Marshall would have to lose his hands and legs, due to the terrible damage caused by the septicaemia which often accompanies Meningitis. Marshall’s hands and legs were amputated on 27 January.

Said Stephanie, “We knew it had to be done, otherwise Marshall would not survive, but on the day of the operation Moss and I were just inconsolable. It seemed so unfair.”

Marshall was allowed home in time for Easter. His Mum and Dad had maintained a vigil by his bedside throughout his ordeal. “We were so glad to be allowed to go home at last”, said Moss, “while the medical staff had been marvellous, being in hospital for three months had taken its toll.”

EASTER - SEPTEMBER 2009

From Easter, Stephanie and Moss tried to restore some sort of normality to their lives, with their priority being Marshall’s care. Marshall faces a lifetime of rehabilitation while adapting to the use of prosthetic limbs, with the aim being to have Marshall ready for a first set of legs later in 2009. To allow this to happen, Marshall requires a considerable amount of physiotherapy, particularly to his legs, because the amputations and skin grafts have left his stumps very badly scarred and the skin very tight.

Stephanie herself is undertaking much of the physiotherapy and she received specialist training while she and Marshall were still in hospital in Bristol. She explained, “It was very important to me to be as actively involved as I could be in Marshall’s care and rehabilitation. The physiotherapy is hard work and sometimes Marshall is more co-operative than others, but I enjoy it because I feel that it is making a difference and I know that it is helping Marshall.”

Gradually, Stephanie and Moss have been able to become more involved in the HANDSTAND Appeal – the Appeal set up by Marshall’s family to raise money for prosthetic limbs. Said Moss, “We are very fortunate in having a large, extended family who have rallied round to support us. We were completely dependent on them setting up and launching the Appeal, as we were still in hospital with Marshall.”

As a result of the HANDSTAND Appeal, Marshall has become a bit of a celebrity, having been featured in numerous newspaper articles, and having appeared on BBC, ITV and Channel 4 News. “To be honest”, said Stephanie, “We have very mixed feelings about appearing in the media. We know it has to be done to promote the HANDSTAND Appeal but we never wanted to be famous. We just wanted to be a normal, happy, little family.”

Stephanie and Moss have been astonished by the kindness and generosity of people since Marshall’s Appeal was launched. Explained Stephanie, “We have had people, quite literally, stopping us in the street and handing us money.” The HANDSTAND Appeal set up a PO Box, to which donations can be sent and Stephanie has been touched, as much by the lovely messages which the family have been sent, as by the financial contributions. “Some of the messages have moved me to tears”, said Stephanie. “The way the public have responded to the Appeal restores your faith in human nature”, said Moss, “not only in donating money, but in giving up their time to organise and participate in a huge amount of fundraising activity and events.”

Two significant milestones were reached in the last week of July, when Marshall received his first pair of legs and the HANDSTAND Appeal reached £50,000. Commented Stephanie, “It was such a joy for Marshall to stand for the first time and give me a proper hug. He seemed so tall!” These legs are not the ‘proper’ legs which will allow Marshall to walk. They are designed to help Marshall get used to standing and balancing. The ‘proper’ legs are still some months away, depending on how Marshall develops. And his hands will not be fitted until sometime after that. Explained Stephanie, “It is important that Marshall learns to touch and feel with his stumps, before he has hands fitted. He is now 19 months old and like all babies of that age, he is very keen to explore.”

The family’s excitement at the HANDSTAND Appeal reaching £50,000 was tempered a few days later when Stephanie and Moss were told that Marshall’s prosthetic limbs would cost even more than they had anticipated. This followed a consultation at Dorset Orthopaedics, who will provide Marshall’s prosthetic limbs. Marshall’s first set of legs will cost £9,727 EACH and his hands will cost £14,172 EACH. Marshall’s hands and legs may have to be changed as often as once a year, every year, until he is 18. This means, potentially, that Marshall's prosthetic limbs will cost £850,000-£950,000. “When we heard this,“ said Moss, “We thought, ‘How will we ever raise this amount of money’, but, quite simply, we have to. If we are to secure the best possible quality of life for Marshall, the money just has to be found.”

“So”, said Stephanie, “We were on a bit of an emotional roller coaster. Plus, there was a lot of media interest in Marshall’s first set of legs, so we were doing TV and Radio interviews, face-to-face interviews and telephone interviews. Having to relive Marshall being rushed into hospital and having his limbs amputated was emotionally draining.”

Stephanie responded, “It was so kind of Charles to send such a lovely message. We are proud of reaching this figure but our overwhelming feeling is a sense of gratitude to all those who have helped us reach this amount, and to all those who have contributed and who continue to do so.”

 

September, October and November were busy months for the HANDSTAND Appeal, and for Stephanie and Moss. Redruth Rugby Football Club announced that they were ‘adopting’ Marshall and he was duly elected Honorary Junior Vice President of the Club. Redruth RFC has committed to raise funds for the Appeal for the next three years. Camborne & St Ives Round Tables organised a World Record Attempt on the Three Legged Race. The attempt just failed but 350 people took part and raised over £5,000 for the Appeal.

 

Skinner’s, Cornwall’s leading independent brewery, announced a three year sponsorship package to support the HANDSTAND Appeal. The Appeal will be launching its own Rugby Shirt early in 2010 which will carry the Skinner’s logo. In addition, Skinner’s will produce a limited edition beer every year over the three years. The first, named ‘HANDSTAND Hooch’ went on sale just before Christmas. Leading up to Christmas, the Appeal produced its own Christmas Card, the result of a competition for schools run through the West Briton newspaper.

 

Commented Stephanie, “It has been a hectic few months, with lots happening with the Appeal, but the support we are receiving is amazing. I like to take Marshall to as many fundraising events as I can to thank people for their support. People make a big fuss of Marshall and he likes the attention. He is ever so sociable.”

 

Stephanie has to fit these events in around Marshall’s programme of rehabilitation, which will go on for the rest of his life, and represents a huge time commitment. Stephanie does physiotherapy with Marshall every day and has to apply creams all over his body twice a day. She tries to have Marshall wear his ‘trial’ legs for some time every day. Sometimes Marshall is more co-operative than others, because they restrict his mobility. Stephanie explained, “He wants to be scooting about but he can’t with the legs on. These aren’t ‘proper’ legs. They are designed to get him used to standing and balancing.”

 

In addition, Stephanie takes Marshall for further physiotherapy once a week to Treliske Hospital in Truro, and she also makes a weekly visit to a hydrotherapy pool, as well as taking Marshall swimming once a week in a normal pool. Marshall loves swimming and it is a particularly effective physiotherapy exercise, which is essential to prevent the skin on his stumps becoming too tight. Stephanie and Marshall have to travel up to Plymouth every other week to visit Derriford Hospital for scar management, and they visit Disablement Services, who monitor Marshall’s progress in preparation for the fitting of his ‘proper’ prosthetic limbs. Every three months Stephanie takes Marshall to Bristol where his consultant monitors his overall progress. Marshall also has his sight and hearing checked every three months.

 

 

CHRISTMAS 2009 – TO DATE

 

Christmas was a time of very mixed emotions for Stephanie and Moss. 22 December was Marshall’s second birthday and, of course, Boxing Day was the anniversary of his Meningitis attack. “What a difference a year makes”, said Moss.

 

Prior to Christmas, the HANDSTAND Appeal decided to hold a Christmas ‘Thank You’ Party – to say thank you to everyone who had helped the Appeal and also to try to raise funds for Ronald McDonald Houses and Meningitis UK.

 

Explained Stephanie, “When Marshall was in hospital in Bristol for three months Ronald McDonald Houses provided accommodation for myself and Moss free of charge. We simply could not have coped without it. Meningitis UK are trying to develop a vaccine to combat the disease. If we can help, in some small way, to prevent what happened to Marshall happening to someone else, we would be so pleased. It might seem a bit odd to be raising money for another two charities but we felt that it was the right and proper thing to do, plus we just wanted to say a big thank you to everyone who has helped us and who continues to do so.” 

 

Marshall was, perhaps understandably, inundated with presents for both his birthday and Christmas. “He has been terribly spoiled”, added Moss, “But if anyone deserves it, I suppose Marshall does after everything he has been through.”

 

The best present of all was that the Appeal reached £135,000 and this was announced, poignantly, on Marshall’s birthday – and caused huge media interest. “It was the usual mixed emotions”, said Stephanie, “Amazement and delight at reaching such an amount, worry and nervousness about the media, and terrible trauma at having to relive the events of this time last year.”

 

Stephanie and Moss have gone into 2010 possibly with more hope than they could have imagined a year ago. A year ago their lives were turned upside down. Meningitis is often described as every parent’s worst nightmare. For Stephanie and Moss that nightmare became a horrible reality.

 

Stephanie and Moss know that they face a long and arduous road, but their overriding thought is that they have to do everything within their power to secure the best possible quality of life for Marshall. What sustains them, however, is that they are not alone. Said Moss, “We are so lucky to have such a supportive family and so fortunate that so many people have rallied round to help. We cannot put into words just how grateful we are for all the support we have had.” “We thank everyone from the bottom of our hearts”, added Stephanie.

 

On 05 March 2010, the anniversary of the launch of the HANDSTAND Appeal, it was announced that the Appeal had reached £158,886.18.