About Charlie

On the 20th September 2007 at 14.02 weighing 7lb 14oz Charlie made his entrance in to the World at St Marys General Hospital, Portsmouth. Our World changed forever and we were besotted with him. Covered in a fine dark downy hair he could have easily been mistaken for a little monkey and although this would all disappear and by his first birthday he was a little blondie – he was still a little monkey!

The first year of his life saw him reach all his developmental milestones and enjoy lots of fun things. We dabbled with a bit of baby sign, he went swimming every week and barely a day went by when he didn’t get a blast of sea air at the seaside. All our efforts went into getting it just right!

As his toddler years progressed he learnt to ride his much loved red trike and by the time he was three he could swim quite happily on his own. He loved to kick a football around and had a great fondness for animals and all wildlife. His World seemed complete when he became the proud ‘rescuer’ of four battery hens and a fostered whippet called Mitzy! He would chat away to them all and they would all get included in his ‘Fireman Sam role play scenario’s!’

Just before his third birthday it was discovered that Charlie would need glasses as he was long sighted and had a little bit of a squint. Charlie was over the moon at the prospect of getting glasses! He wasn’t however so enamoured with the idea of having to wear a patch every day for an hour but with a little bit of gentle persuasion and a touch of bribery he tolerated it very well. His eyesight improved very well. It was also deemed that he needed a tonsillectomy, adenoid removal and insertion of grommets just before his third birthday! Once again he sailed through and was probably better with it all than we were! A life changing operation and our little ‘Brontosnorus’ came home breathing quietly and no longer a little snorer! For a little while he even slept a bit more and that was the end of ear drops and antibiotics for us!

Despite these two minor health issues Charlie was a bright and energetic little boy who very soon, once again, didn’t feel the need to sleep a great deal so therefore made the very most of every day! He could be cheeky and mischievous but at the same time was a loving boy who enjoyed his home comforts and little routines. He would enjoy a snuggle in front of his favourite films like Monsters Inc, Toy Story and Cars and many a Tom & Jerry and You’ve Been Framed we have sat through!

Enjoying many holidays on the Cornish Coast and at Center Parcs we all certainly made the most of family time.

Then, on 18th October 2010, when Charlie had just turned three, his little Sister Freya arrived in his World. The first few months while she couldn’t do anything he was the proud and protective big brother. Then she started to crawl. His toys were no longer sacred and his lining up of cars and Toy Story figures would become a problem! Freya the Destroyer was on the loose but that said even when she absolutely tested his patience messing up his games he was always very gentle with her.

By 2011 Charlie was starting to write his name and take a real interest in learning. He enjoyed both his preschools (Hopscotch, Titchfield and The Scout Hall pre-school in the village); but being one of the older children he was ready for ‘big school’. He was very excited about the prospect of next year going to school.

In September 2011 Charlie desperately wanted to have his fourth birthday party at home (despite us trying to convince him it would be fun to go to a soft play centre perhaps or a village hall!!!) so all his friends came and so did Scotty the Clown. Charlie had seen Scotty’s show at Paultons Park a few months before and was really captured by him so Scotty was invited to Charlie’s party too!

He had a wonderful time. Then came Christmas and by now Charlie was fully understanding of the great man himself and also believed very strongly that the little Robin (or ‘Robern’ as Charlie called him) who popped in the garden every so often was watching to check he was being good. This house believed! So a wonderful Christmas was had with Charlie surrounded by his cousins and this year a walking, talking little Sister!

Then on 23rd March 2012 Charlie’s World would begin to change.

On the 22nd March 2012 Charlie scooted to school like any other day. We stopped and had a photo taken at a tree that had had wild birds and animals carved into it during the previous weeks and Charlie went to pre-school as usual. It was when I picked him up from preschool that afternoon that we noticed he had a little tremor in his hands. One of the lovely ladies overheard me mention this to Charlie and confirmed that he had indeed had trouble completing a lace threading exercise they had done that day. As Charlie was due to go into hospital the next day for a straightforward grommet re-insertion I felt it best to take him to the GP that evening to check he was fit for surgery and didn’t have an ear infection or something.

The GP had a look at Charlie and decided it best we take him to the ward at Queen Alexandra’s Hospital where he was due to have his operation the next day; just to get him double checked by the Ear Nose and Throat (ENT) team. By the time we were seen just a couple of hours later Charlie was also now displaying what we described to him as ‘wobbly legs’. He was quite stumbly and was finding it tricky to walk straight. Still very lively and energetic though we played in the ward playroom and read a couple of stories. Owing to an emergency case that had come in the earlier in the day the afternoon progressed to evening and Charlie fell into a very deep sleep, almost un-rousable. This was unusual for him but it was put down to having had a long day and perhaps a little ear infection. With only a child’s chair to perch on in the playroom it was decided that it would be best to take Charlie home to his comfy bed and review him in the morning.

The next morning on the 23rd March 2012 we were asked to take Charlie back in to have an MRI scan on his head under general anaesthetic. Still blissfully naive and unaware we thought they were looking for an ENT type problem. It was only as we sat and waited for Charlie to come back from his scan that good old ‘google’ started to make us worry. I had noticed on one of the pages of Charlie’s notes that his walking had been described as ‘ataxia’ so that’s what went in the search. This was the first moment it occurred to me it could be neurological and the word tumour was put into our minds. Still full of hope that there was no way such a fit, healthy, lively little boy could possibly have anything like that we waited.

Then at 7pm, while Charlie slept of the anaesthetic, the Consultant came to see us and our World changed forever. It simply dissolved into a million shattered pieces. Charlie’s scan had revealed a brain tumour and we were told that it was possibly ‘quite large and not in the best of places in his brain’. Absolutely distraught with this devastating news we were moved to a side room where we would stay until we were transferred to the Specialist Unit at Southampton General Hospital as the team there would be in a stronger position to inform us of the options for dealing with this tumour. Barely able to function we put on a brave face for Charlie and asked the Consultant if we could take him to the circus which we had previously booked for him which he was so excited about. Sadly, just as we arrived Charlie had a nose bleed so we had to rush him back to the hospital. He was so upset but we didn’t know at this time if it was connected to the tumour. As it turned out it was just a coincidence and Charlie did get to the circus a couple of weeks later.

Sunday afternoon came and we were transferred by ambulance to Southampton General Hospital. Charlie thought this was very exciting and despite still having a bit of a tremor, very wobbly legs and a slightly more obvious squint he was still full of life and playing around with the monitor lead that was attached to his finger! The steroids he had been started on were helping a little and this gave us renewed hope.

We got settled on the new ward and awaited the entourage of specialist Consultants the next day.

On Monday 26th March 2012 at 2pm, again while Charlie slept, we were taken from the ward to a quiet room where, over the two hours that followed we were informed that Charlie’s tumour was in fact a Difuse Intrinsic Pontine Glioma and was untreatable and inoperable and we had between 9-12 months left with him. Those two hours felt like 5 minutes. Everything just went blurred and time stood still. The only thing we could consider for Charlie would be a course of 30 radiotherapy treatments which might shrink the tumour slightly and give us a little longer with our beautiful boy and possibly improve Charlie’s symptoms a little.

Life would never be the same again. Two weeks later our lively little boy could no longer talk, walk, swallow safely, go to the toilet or play.

Charlie bravely, and still with a sense of humour, had his radiotherapy treatment every day for 6 weeks under general anaesthetic. On completion, we celebrated with a stay at one of Charlie’s favourite places – Legoland and for the next 3 months did every fun thing we could possibly do. We went to Disneyland Paris, fishing on the Norfolk Broads, holdiay’s to Cornwall, shows, Paultons Park, a helicopter ride, visits to Air sea rescue helicopter and the list goes on. Charlie was visited by policemen, firemen, Blaze Bear, Scotty the clown, Laurie the Magician, tractor rides – you name it, if we, or family and friends could organise it – we did it!

However, by the beginning of August Charlie was sleeping more and more and owing to the steroids he was taking to relieve his symptoms, his increase in size was making simple trips in the pushchair or car too uncomfortable for him. We therefore spent all our time at home with lots of wonderful people coming to see Charlie and keeping Charlie as comfortable and well as was possibly. Home was where Charlie wanted to be.

Charlie could by this time only communicate by blinking yes or no as answers but we knew he was not in any pain and as long as we were sat by him he was content.

Because of his love of animals we filled his last few weeks with lots of pets! He got his kitten he named Blue and he had a big bowl of bright fish to look at on the table in front of him as well as his two hamsters kindly donated to him by neighbours in our street. Connie his favourite chicken would be allowed in the house to visit and in his final 2 days, as an early birthday present, he got Molly his whippet puppy. Molly arrived at our home on the evening of Tues 4th September after a long journey from Devon. She was placed on Charlie’s lap and apart from the times we took her outside for her ‘calls of nature’ she would not move from Charlie’s side. It was the most incredible thing to see. It was like she knew. There she stayed until he passed away at 22:51 two nights later.

Charlie was in our arms comfortable, peaceful and cuddled into his puppy Molly.

On the day he should have been starting school and just 2 weeks before his 5th birthday Charlie’s physical life with us here was complete. Charlie now lives on every day in our hearts and is part of all our memories.

He was and still is our wonderful little boy who was the bravest person we have ever known. His strength and his humour even in his final few months was truly inspirational to us and his love for life and everything around him kept us going and still keeps us together today. Despite the feeling of loss that is indescribable we feel we owe it to Charlie to keep the dignity he taught us.