Well we were up at 3 am got all the gear in the back of the van and off we went to Sheringham for a 4am start. We arrived just as Chris got there, I knocked on David’s door; he was a bit grumpy as he didn’t get much sleep, two of his friends actually got up to see us off. It was a bit chilly and I can honestly say none of us were looking forward to it. We had to pop to Chris’s house for his supplies and we set off about 4:20am. We headed down the coast to Yarmouth, the wind was light and we made good progress, Chris got into the zone and at one point was hitting 22 mph, we got past Yarmouth and were surprised by one of our friends, John who cheered us on rather unconventionally. We started to realise the task we had set as we hit the 40 mile mark and both me and Chris were starting to feel twinges in the knee, we pushed past 60 miles and then 70 and were making good time, then our luck changed, the wind began to pick up and we were then cycling against it, our speed dropped dramatically from 16.5 to 17.8 mph down to 12.5 to 13.7 mph, it then became a very hard slog, we kept it going for another 30 miles, it was beginning to tell, we were all in a lot of pain, we stopped just outside Downham market and had a confab, we knew that if we continued much further we may end up doing some damage to ourselves, but we still wanted to do as much as we could, it became psychological . We decided that we would rest in the van while Lorraine drove us to Wells, this stretch is the hilliest part, but the fact we were on the home stretch might give us the boost we needed. We stopped and got back on the bikes, every part of my lower body hurt, I thought I was sitting on a razorblade, we set off against the wind again and I have to admit it became a quest, we just needed to get their now, every hill became a mountain, but we kept going, friends and family began to cheer us on to the finish eventually arriving in Sheringham at 5:30pm 43 miles short of our target. Would I do it again? I hear you ask; right now I don’t think so!

The little girl pictured is my niece Angelina; in June 2009 she was born with a rare condition known as Sturge –Weber. It is linked with the port wine stain she was born with, for most children this is purely cosmetic, but for an estimated 1 in 50,000 (about 0.018% of the population) in the it has a more serious effect. This is an abnormality of the brain caused by abnormal blood vessels on the surface. This abnormality usually results in frequent and prolonged epileptic seizures and other health related problems such as a weakness or paralysis in one side of the body (hemiplegia, similar in appearance to that of a stroke), glaucoma and developmental issues causing varying severities of learning difficulties. There is no cure for Sturge-Weber Syndrome, only the life long treatment and support put in place to control symptoms and minimise further health problems. Angelina has had different levels and types of medicine administered, in what sometimes seems a futile attempt to control her seizures, the frequency of which is closely linked to the potential severity of other health related problems. Stephen my brother and Lisa look after Angelina along with their two sons, they have made several trips to great to have various treatments, tests and decide what will be the best for her. After some time they had to make the difficult decision to operate, which will take place on June 2010. This involves isolating the part of the brain affected by the blood vessels (angioma) with an operational procedure known as a hemispherectomy, and is considered for the more severe cases of Sturge-Weber Syndrome. It goes without saying that this type of operation carries great risk especially on one so young, with no guarantees at the end of it, only the hope and prayers of the family that Angelina will benefit and improve her quality of life as a result.

Angelina is a beautiful little girl always smiling and is very precious to her family, I, my other brother Paul and my son David along with some very good friends have decided to raise as much as possible for the Great Ormond Street Hospital Neurosciences Unit. For us it is a way of showing our appreciation for the help they are giving Angelina.

What we have decided to do is to cycle around Norfolk about 196 miles, not in two or three days but in one, yes I know what you’re thinking, you must be mad, and you would be correct, especially as none of us are highly fit regular cyclists (I feel the aches already). We know it’s a challenge and I don’t expect all of us to complete it, but it’s a reflection of how far we are willing to push ourselves for this worthy cause. Some of us have bought bikes and some of us serviced existing ones ready for the event, which will take place on the 12^th June 2010. We hope to raise as much as possible to add to the total of money already raised on behalf of Angelina.

And then there were three, to update everyone on our attempt, we have gone from 7 people to 3, due to injury or other commitments, the guys who are now unable to do the ride are gutted, but who said life is fair, hopefully the three of us who are left, Me, Chris and David, will complete it.

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Rob and the team

  * Sourced from Great Ormond Street Children’s charity - the Neurosciences Unit at is the largest paediatric neurosciences centre in the providing care for children with disabilities, tumours and diseases affecting the central nervous system such as epilepsy, craniofacial disorders, cancers and hydrocephalus. The unit combines the most comprehensive clinical services in the with world-class pioneering research and training.  Each year the neurosciences team treats over 8000 children from across the world, carrying out over 800 operations including those with Sturge-Weber Syndrome. However, much of the current physical environment is cramped and outdated with related neurological disciplines fragmented within the hospital site.

 

In contrast to the present facilities, the new Neurosciences unit within the new clinical building will not only provide an opportunity to create a well-designed, child-friendly space for our patients but also one which will attract more world-class clinical and research staff.  We believe that bringing the neuroscience teams together in a dedicated space will provide the catalyst for significant advances that will have a major and widespread impact on the health of children with complex neurological conditions. It will enable the hospital to pioneer new patient treatments, undertake groundbreaking clinical research and prepare the next generation of leaders in child health. The is due to open in 2012. Demolition work on the existing site to make way for the new building is now complete, and construction of the new building started in November 2008 albeit significant funding is still required to successfully complete this development programme.

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