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The Old Crumpet Factory

16 Brockham Lane


Surrey RH3 7EL

01737 845630


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Charlie, one of twins, was born 10 weeks early by Emergency C Section, weighing just 2 lbs, on the 24th August 2009. Doctors believed this intervention was crucial to the twins' survival as Charlie had stopped growing and his condition was starting to deteriorate. It was also essential if he was to receive the nutrition and care so urgently required.

Charlie’s Story

I missed that special moment when a baby is born and passed to their mum for that first cuddle. Both were taken away immediately and placed in incubators. We were unable to hold Charlie for the first week. His condition was so poor that we could only look at him through the incubator glass. It was a very long wait before we were told that we could get him out for a cuddle.

The £60,000 was raised and Charlie went to St Louis Childrens' Hospital in September 2013. There he underwent SDR and corrective surgery for his squint. The spasticity disappeared from his legs overnight but I wept when I saw his first post op physiotherapy session. The residual strength in his legs was minimal and he was unable to support his own weight, let alone walk. Self-doubt crept in, had we done the right thing?

18 months on, I am in no doubt it was the right decision. The physiotherapy programme is gruelling for any 5 year old, let alone one with Charlie's disabilities. Much of it is play based, distracting him from the strengthening activity that he is actually undertaking. It consists of 4 one hour sessions per week with a trained therapist, intensive 3 week sessions of Spider Therapy at Footsteps, near Oxford, 3-4 times a year and weekly sessions with Riding for the Disabled, interspersed with hydrotherapy sessions at our local hospital. While Charlie's left hand remains fisted much of the time and the seizures are a great concern, his core strength is much improved. At last he is showing signs of being able to walk using his Kaye Walker, his head now only drops when he is tired and amazingly, SDR seems also to have freed up his speech. We suspect that is because he is no longer in pain from the spasticity in his legs. Music is going to be his great love, with Sarah, by Fleetwood Mac, his current favourite.  Although normally affected by speech delay, that affliction disappears when joining in a chorus.

After a couple of months, my mothering instincts told me something was wrong. Although I had been brought up to believe that you should not compare children, it was obvious to me that Charlie was falling badly behind his brother Bobby. Unable to roll over or sit, unsupported, he struggled to hold his head up and his fists were clenched most of the time. At a follow up appointment with his Paediatrician, we were given the heart breaking news that they suspected that Charlie had Cerebral Palsy, confirmed 12 months later following an MRI scan. I remember bursting into tears and it took a long while for us to come to terms with this diagnosis.  

Shortly after that diagnosis, we started attending Play and Learn Sessions at White Lodge - a Centre of Excellence for those with Cerebral Palsy. It was great to meet other mums who were going through the same challenges. In time, Charlie joined the nursery group there, receiving alongside his therapies, an education following the Early Years Foundation Stage. In addition to White Lodge, we enrolled at Ingfield Manor School for Parents in Billingshurst. There, parents are taught how to assist the disabled child to attain the skills required to become independent. Our attendance and the knowledge gained, proved invaluable.

Now, alongside the need to raise £12,500 each year for the therapy programme, we have to give some attention to Charlie's accommodation needs. He is getting heavier and more especially, longer. We will not be able to carry him up and down stairs soon and our house is far too small for many adaptations.

However, the doctors and nurses at St Peters and Frimley Park did an amazing job and he was able to come home after 7 weeks in the Special Care Units.

At this point, Charlie had already endured several surgical procedures. Both boys had inguinal hernias and Charlie also had to have hypospadias surgery. Additionally he was suffering from a squint and the onset of Epilepsy.

On the positive side, Charlie's personality was also emerging as a happy, sociable little boy with a wicked sense of humour and very keen hearing. He misses nothing happening around him which, combined with a memory that would not disgrace an elephant, will stand him in very good stead for the future.  We were determined to give this little boy the future he deserved, rather than the one that he had been cruelly dealt.

The UK approach to disabled children leans towards the palliative, simply alleviating pain and discomfort. Other countries have a far more proactive approach, using their acquired knowledge and skills to help the disabled to develop to their full potential. Our research led us to Dr T S Park of St Louis Childrens' in Missouri, USA. He had pioneered Selective Dorsal Rhizotomy (SDR) surgery, carrying out over 2,500 successful procedures on disabled children and adults, giving them the chance to walk, in some cases unaided. However this procedure was expensive at £60,000 and Charlie would need a very intensive programme of Physiotherapy costing £12,500 per annum for years after, in order to rebuild his strength. The financial challenges faced by the NHS are well documented and if we were to give Charlie this life enhancing opportunity, then we would have raise the money privately.

Our fund raising Journey began with a charity ball at a local golf club and progressed via personal feats of derring-do by Charlies' supporters, encompassing fun runs, sky diving, cycle rides and similar individual and group activities, too numerous to mention.  Other fundraising activities included Teddy Tombola, Human Fruit Machine, bag packing at local stores, together with many individual donations. Several Pubs and our local golf club at Pine Ridge rallied to Charlie's cause and we received very substantial donations from my husband's employer, Baxter Storey, and the Children with Special Needs Foundation. Not just the local community but many others, from far flung places including America, have taken Charlie into their hearts with donations large and small. We will be eternally grateful to all of them for giving him the opportunity to reach his full potential.

There followed a hunt for the best solution for Charlie that could be achieved with both Charlie and funding in mind! This all started in December of 2012 when we applied via the Occupational Therapist, for a Disabled Facilities Grant. As a note to others in our situation, we found that it can take a long time to get an appointment.

In June of 2013 we had a site assessment of our home which was carried out by an Occupational Therapist. We received a Positive Adaptations report in July of 2013. It recommended a ground floor extension to provide dedicated wet room and bedroom. However this decision was subject to approval by the Councils' Technical Officer.

This recommendation was rejected in November of 2013, probably on the grounds of cost, although this was not clear. In its place a through floor lift was recommended. Later that month we had a Lift Installation Assessment carried out by a surveyor. The surveyor advised that 'Lift installations like this, only work if the head of the bed is on the same wall as the bed, it won't work here and that is what the report will say!' Unfortunately no report accompanied the quote so it is impossible to confirm the surveyor’s comments.

The months between January 2013 and October 2014 were spent trying to persuade the Occupational Therapist that her original recommendation was the correct one. The proposed Through Floor Lift would have a negative effect on the whole families ability to enjoy their home and kill off my income from child minding. Charlie’s brother, Bobby, would have to move out of the bedroom he shared with Charlie into the spare room normally used by one or other of us whilst ministering to Charlie's night time needs. The dining table would have to be moved from the kitchen into an area of the lounge used for Charlie's privately funded physiotherapy sessions and to store his extensive range of equipment. In all these talks with various bodies we found it essential to strongly argue Charlie’s case whilst remaining calm and polite. Losing your temper, however frustrated you might feel, may harm your case. The people you are negotiating with are working within guidelines and it is important to shape your argument accordingly.

In October 2014 we attended a Constituency Surgery with our local MP, Michael Gove. to enlist support for Charlie's case. He listened to us very politely and sent a very supportive letter to Surrey Heath Borough Council. At this time there was a lot of communication between our family and the Occupational Therapist at Surrey County Council, who subsequently rejected our plea. It seems that the Surrey Heath Technical Officer supported the Occupational Therapist in preference to mediating the case.

Surrey Heath Borough Council received a letter from Michael Gove's department which asked them to respond to the family's concerns. In December 2014 Charlie's local Council member offered to help and arranged a meeting with the Leader of the Council, which took place in January 2015. She was an impressive lady with a surprisingly good grasp of the facts, who listened intently to our presentation of Charlie's case and subsequently asked Tim Pashen, Executive Head - Community to meet with the family. Frankly others must not underestimate the ability of your local councillor to help your cause. He or she will almost certainly have better local knowledge of the Disabled Facilities Grants administration and perhaps more influence than your MP.

In January 2015 that letter from Michael Gove was passed by Tim to Alison, managing director at Independent Home Solutions (IHS) who was seconded to Surrey Heath to help with case work. She then had a long chat about the deadlock with Charlie's grandfather Geoff. Tim and Alison agreed to try and resolve the problem.  Alison then arranged a meeting with her, Tim and the Social Care Children's Team. During this meeting the Social Care Team's Occupational Therapists were persuaded to see the family's argument and they agreed to support the family's request. Later on Alison, Tim and Charlie's granddad Geoff met and the Council resolved to consider the ground floor extension option, which led to Alison and the IHS surveyor Errol, visiting Charlie's house to conduct a feasibility study.  

We felt that the reason our MP's request for help had been rejected was that, despite the fact that we thought approaching the Occupational Therapist for an assessment was making an application and that the Councils Technical Officer had visited, no formal request had been made. It is important to make sure you start the process correctly, and with the correct people, and that you follow through on every stage making sure progress is being made.

In February 2015 we had a site meeting with our Case Worker and an Independent Home Solutions surveyor to discuss plans for the extension.

In March 2015 we started a fund raising campaign to meet the gap between the maximum Disabled Facilities Grant of £30,000 and actual cost of work.

The moral of this story is to never give up; you just don’t know when your luck might change!

Charlie’s planned new accommodation, at the side of the house

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Well, things have moved on at last and Charlie’s building work to provide a purpose built extension is about to start. Hooray!

The planned work will incorporate a new wheelchair accessible bedroom and shower room, external ramps and internal access into the main living areas of the family home. It is so very important that Charlie continues to feel fully engaged in family life and not cut off by his new circumstances.

The family have worked tirelessly on raising the extra funds needed to supplement the Disabled Facilities Grant approved by Surrey Heath Borough Council and now here we are, ready to start the work. The builders are fully briefed in this project and the work will take several weeks.

The hoped for end result is that Charlie has increased independence and safety and just as importantly, his own space.

We will post photographs of the ongoing work as it progresses so that you can share our excitement at the goal being finally achieved.

Latest News as at 14th February 2016

If you would like to join Charlie's angels then please look at his facebook page:

Visit Charlie's Facebook page. Opens in a new tab.

And if you would like to make a donation for Charlie then please go to:

Visit Charlie's JustGiving page. Opens in a new tab.

Any sponsorship or donation you could give would

really make a difference to our little man's life.

Thankyou for taking the time to read this.

Latest News as at May 2016

The team from Archway Construction, selected by IHS, turned up on time and work commenced. Progress was a little slow to start with. A prefabricated garage had to be carefully dismantled for environmental reasons. Groundwork revealed that the property had been extended a number of times and once had a ground floor bathroom. The builders were confronted with 5 soil pipes and 4 manholes largely under the proposed extension. These were patiently re-routed into a single run and there were very wide smiles on the builders faces when tests proved the amalgamation was an unqualified success and Charlie wouldn't have a manhole cover in his accommodation.

With the early challenges out of the way, work progressed swiftly. Foundations were laid and the shell up and watertight within 4 weeks. The skylight in the wet room seems huge and will certainly brighten bath time for Charlie. A couple of weeks later and the stud partitions are in place. Now for the first time we can get a feel for the size and shape of the accommodation and begin to appreciate how much easier it will be for us to manage Charlie's needs.

While all this has been going on, the family have continued to raise funds to give Charlie the opportunity he deserves to live a full and satisfying life. In this regard the family have been fortunate have neighbours and friends who have really taken Charlie's cause to their hearts. A number of initiatives including golf days, Valentine, summer and Halloween balls and numerous sponsored events have raised thousands of pounds to fund surgery and physiotherapy to help Charlie walk. Circa £30,000 has been raised towards the £60,000 build cost of this extension. The Children with Special Needs Foundation have been particularly supportive of Charlie. In this instance they have funded the purchase of a Geberit toilet and made a significant cash donation. Several large companies have donated equipment either for free or at heavily discounted prices. There is a lot of help out there, if only you ask.

With funding in place for the adapted accommodation, the emphasis returns to raising £12,500 pa for Charlie's privately funded physiotherapy programme. If you are interested in following Charlie's progress or, better still, making a donation please go to Charlie Grainger Fundraiser on Facebook.

Now the family and especially Charlie can't wait to see the finished article and, if you have been following the progress of the build then I suspect you are quite curious too.

It would be remiss of us not to express our thanks to the Archway Team for the professional manner in which they are delivering the project and for their unfailing good humour, which even extended to the family dog pinching their pork pie and sugar lumps. They have a wide mix of trades between and there has been little need to call on outside trades which can delay a build and derail a budget. It would be quite wrong of us not to acknowledge the invaluable role of Errol Grant of IHS who designed the accommodation, dealt with the tendering, appointed the builders and oversees the build. His role behind the scenes should not be underestimated.