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Me with Pluto and a happy Mum.

A GRANDFATHER’S STORY.

 The pain was excruciating as my wife Kathie and my eldest daughter Sarah helped me into the car. It was 22 April 1999 and I was just out of hospital following a hernia operation. We were on our way to see Rachel who had just given birth to Ryan, our first Grandchild. Little was I to know that only five weeks later Ryan would also be having an operation for a hernia. This to be the first of his many hospital visits over the next ten years.

 Ryan was a beautiful baby but used to cry a lot from what, we now know were the result of classic Hunter disease symptoms. Over the next two and a half years we were to get used to not knowing why he had so many medical problems. Then, one day, someone in hospital recognised the typical facial look that so many Hunter children have and the diagnosis soon followed. Ryan had MPS 11, a particularly rare form which had all of the physical symptoms but also the brain strain as well.

 I remember Rachel telling us the news as she sat crying her eyes out whilst cuddling Ryan. What on earth was Hunters and what could we, as Grandparents do to help. So began the quest for information, this in the days before the wonderful MPS Society was known to us and which today would be the first port of call. Our doctor could not help as he had never heard of it. For me it meant trawling the internet and learning as much as I could myself. What I found out was not encouraging; Ryan could have some remedial surgery to relieve the pain he was obviously in but there was no cure.

 What we all learned pretty quickly was that you have to fight to get the best you can for a disabled child. I am immensely proud of the way Rachel (Ryan’s Mum and my daughter) has managed to get the best for Ryan by finding her way through loads of bureaucratic minefields. We also had help from the most unexpected quarters, David and Victoria Beckham provided a wonderful state of the art buggy when they heard Ryan did not like the traditional wheel chair. Dreams Come True gave him a tricycle specially adapted so that he thinks he is pedalling and steering – neither of which he can now do.

 In 2006 we started a campaign to try and get ERT treatment brought forward from April 1^st 2007. We finished up with contact with Tony Blair and various other MP’s as well as publicity from ITV, BBC and national and local press. Whilst we were not successful, we learned a lot about how to lobby for the help needed to care for Ryan. During this time we came across some wonderful, helpful people and one or two well meaning but totally incompetent ones; luckily there are far more of the former but you have to work hard to find them. A lesson Rachel says she has learned is not to be afraid to speak your mind, as people are not always right.

 Early in 2007 I started Ryan’s web site so that friends and family, some of whom were reluctant to keep asking, could find out how he was getting on. It has also attracted emails from some families abroad who have stumbled across it. In March of that year Ryan went to hospital to have his Portacath fitted so that he would be ready for his ERT. There were complications with a bit of the tube breaking off and getting lost. So, the operation finished up taking seven and a half hours and Ryan finished up in Intensive Care. Another worrying period for us all. On 4^th April we arrived in Manchester
for his first treatment which went reasonably well. In those days he had to sit held tight by Rachel and myself (in relays) for over three hours. This on top of the journey to and from the hospital, which could vary from one and a half hours to double that, each way. This meant one day a week being written off but the rewards soon became apparent with a more talkative and active Ryan. There was also less crying and more smiling which we assumed was because of a reduction in the pain and discomfort he had been in.

 On Ryan’s birthday my Godson ran in the London marathon with the proceeds going to the MPS Society. We raised some £11,000 which we felt was some small reward for all the help we had received from them. On the day, Clare Stevens, who also has two boys with Hunters came down to support us. She has been a constant support and friend for Rachel and Bob and illustrates the importance of getting to know the parents of other Hunters children.

 In June the ERT treatment took place at home in Harrogate and life became much easier, especially when a back pack was used which meant Ryan could move around. This continues to this day with some wonderful nurses from Health Care At Home looking after him. I am normally there to help them and give Rachel and Bob a much needed break.

 In 2008 Ryan had to move from his local school where he was very happy. The headmistress bent over backwards to keep him longer than she should have. Thanks to her and his two fantastic carers he could not have stayed as long as he did. He moved to Springwater School for children with special needs where he is also very happy.

 In October 2008 Ryan was admitted to Manchester Children’s Hospital for a course of antibiotics and physiotherapy to clear a lung infection which had been making him rather ill. There followed several more visits culminating in a Gastrostomy in November; this because he had been aspirating at a far greater rate than at first thought. After managing to pull the first feeding tube out Ryan eventually returned home in time for Christmas. However, he was now on three feeds a day with no more food by mouth; a devastating thing to happen, for food was the highlight of Ryan’s day. Now the family had to get used to a new regime with Ryan missing out on family meals. He could not understand why he could no longer eat and to this day I am unable to eat in front of him.

 On Ryan’s 10^th birthday we decided to have a party for all the wonderful carers who had helped us over the years. Ryan was delighted to see so many friendly faces and the day was a great success. He has the ability to make everyone who gets to know him, fall in love with him. Although he doesn’t now speak, other than the odd word, one of his smiles makes the dullest day feel full of sunshine.

 Helping to look after a Hunters boy is something Grandparents can do to a greater or lesser degree depending on how close they live. We are able to baby sit so Ryan’s parents can have a break from the 24/7 care he needs at home. We can stay at Martin House Children’s Hospice when he goes there for respite care; if we are there with him it means his sister, Rebecca, can also attend - something she loves. Giving Rebecca extra attention is also a help as she sees Ryan being the centre of everything in the home. Being available to listen when sometimes life seems to be just too much is appreciated.

 People ask how we cope with a child with Hunters. The answer is that we try to make sure today is a happy one. Tomorrow we start all over again. However, we must also look to the future and right now that means planning to cope with Ryan’s increasing lack of mobility. Rachel, Bob and I all have bad backs and Ryan is a heavy boy, so we will have to get funding somehow for a stair lift and hoist for the bath.

 Finally, apart from those already mentioned I must thank the following for their amazingly helpful staff: The Willink Clinic Manchester, Harrogate Hospital Woodlands Ward, Harrogate Social Services and the Harrogate Community Nursing Team

 This, in a nutshell, is my story. You can read much more on www.ryanseeber.co.uk or just Google Ryan Seeber and his site will be the first entry you come to. How cool is that?