Saturday 15 November 2008

Hello Everyone!

We've had a very busy week. We've been on BBC Look North, BBC Radio Tees and featured in the Darlington and Stockton times and the Northern Echo! Below is a copy of the newspaper article which was on the front page of the D & S. a very exciting week.

Thank you so, so much to SSAFA and the RAF Benevolent fund who have given us a very generous grant towards the renovations we've made to our home to accommodate Marcus' needs now and for the future. The Westons are very happy and feeling very grateful that we are will be able to look after Marcus at home well into the future. Obviously, we hope he achieves some degree of independence when he reaches adulthood but the chances are he'll need us more than most when he grows up. The RAF Benevolent Fund have allowed us to modify our home to a very high standard so we can concentrate on giving Marcus the best care and the best start possible. We now have a comfortable room to deliver Marcus' physiotherapy and a downstairs bathroom to meet his personal hygeine needs without having to carry him up and down stairs. They have made our lives much easier now and for a long time into the future. Special thanks go to Mrs Diana Edwards and Tim Bevan for putting our case forward to the committee - and the committee, of course for being so generous.

Richmond CFC sufferer receives grant from RAF Benevolent Fund
9:02am Friday 14th November 2008

By Mark Foster »
LIFE has suddenly become much easier for the family of a plucky youngster suffering from one of the world's rarest conditions.
Four-year-old Marcus Weston of Richmond is one of only 20 people in the UK who suffer from the potentially life-threatening disorder and there are thought to be less than 300 worldwide.
He was diagnosed with cardio-facio-cutaneous syndrome when he was just two.
The many symptoms include failure to thrive, feeding difficulties, poor muscle tone, delayed development, heart defects , hearing and sight impairments, seizures, sparse and brittle hair and various skin problems.
But thanks to a grant from the Royal Air Force Benevolent Fund his home in Pilmoor Close, Richmond, is being extended to meet all his needs.
Mum and dad Gary and Sam Weston said they were "over the moon" at the development.
"It means a whole new world for Marcus," said Gary.
"The extra space provides a downstairs playroom/therapy room for his physiotherapy equipment, toys and books. It will potentially become a downstairs bedroom when he's older.
"We also have a downstairs toilet/shower room which has already made life easier for Marcus and for us, as he is very heavy to be carrying up and down stairs."
The youngster is the best of friends with his six-year-old sister Joely and has transformed his parents lives since he was born.
"He is such a gorgeous, sociable boy and blessed with a smile that can light up any room," said Gary.
"Although he is progressing well, he is unable to eat and lives on fortified milky drinks. He has to summon all his energy to stand up."
Recent tests have also revealed he has a growth hormone deficiency which will need treatment and the family makes frequent trips to the Royal Victoria Infirmary and the Freeman Hospital, in Newcastle.
The grant was arranged by Diana Edwards, a caseworker for the Soldier, Sailors, Airmen and Families Association Forces Help.
Gary, 39, who works for the Ministry of Justice, now plans to do what he can to help the charity.
He served for 17 years in the RAF's survival equipment section, seeing service in the first Gulf War, the Balkans War and Northern Ireland and receiving a commendation in 2001 while serving in Turkey.
He recently completed the Great North Run, raising about 1,500 for CFC International and next year he plans to run in aid of SSAFA

The Weston family

Monday 6 October 2008

























































Hi Everyone
We've had a another busy few weeks. Gary ran The Bupa Great North Run to raise money for Cardio-Facio-Cutaneous syndrome, CFC International. He did brilliantly, with a cold, and completed the race in just over two hours. It's diffucult to tell, as so many of you are collecting sponsors for us, but I think we might reach £1000. All of the money goes towards research into CFC syndrome and provide support for families like us who have to cope with the daily challenges of raising a child with complex medical and learning difficulties - so a huge thank you to you all and well done Gary.


Marcus is progressing well; he's finally managed to pull himself to his feet but it requires a great deal of energy and effort for him to defy gravity! We've also just had the results from some tests he had done in August which discovered he is deficient in growth hormone. Hopefully we can get started on the growth hormone injections as soon as possible so he can start reaping the benefits.


The big build is nearing its end now and the downstairs is just about complete - upstairs still looks like a student bedsit but hopefully it will start to look more palacial once all the walls are plastered! We are sick and tired of dust. I am not best suited to cleaning at the best of times and I am sad to say, I have actually given up the fight now.


I have included some holiday pictures from 'Rip-Off France' - we had a lovely time but we really enjoy eating out and just couldn't afford to this year in France which was a real shame - £50 for 2 pizzas, chicken nuggets and chips and a bottle of Evian. Shocker!


Summer holidays seem such a long time ago now - our next big event is Marcus' birthday. We are having a party at home this year for him. Hopefully, he'll be able to go into his new bedroom for his birthday ;-)


Speak soon


love Sam xxx




































Thursday 7 August 2008







Bonjour tous le monde,
We're in Warwick for a couple of days with mum and dad before we go to France. We're meeting Rosie tomorrow; I met Rosie 25 years ago in France!
The builders are still at work while we're away - hopefully, we'll have a new kitchen and new electrics when we return. Fingers crossed ;-)
I'll chat when we get back,
love Sam

Tuesday 15 July 2008

long time, no speak guys ;-)





























Hello friends,














It's been such a long time since I updated the blog that I don't really know where to start!

Marcus is doing brilliantly at the moment, as you can see from the photographs. We had a couple of stays in hospital at the start of the Summer. Firstly, Marcus had a bout of gastroenteritis and dehydration followed by a mystery virus a month later. Fortunately, he's pretty robust these days and he fought these bugs off pretty easily. Marcus' development is progressing steadily and his communication skills are improving every day; he undestands almost everything we say to him and responds appropriately. His Makaton skills are brilliant and he signs new signs straight away now. STOP! is the new sign of today ;-) Very useful! or it could be - the only trouble being that Marcus has a very cheeky sense of humour and simply laughs whenever we ask him to STOP!

Marcus is also getting stronger, little by little. He is rolling much more confidently and pushing himself up to sitting from lying. He is also trying to kneel and get on all fours; I plan to do LOTS of physio and swimming with him over the school holidays to build on these skills.

Joely has enjoyed a fabulous first year at school. Her reading is brilliant and she's flown through the scheme. She's growing into a very clever young lady; can't think where she gets it from! Joely has also done well in her swimming, her teacher says she's becoming 'a great little swimmer' and her nanna agrees. She's been going to Stagecoach for a year now too and that has definitely helped her to grow in confidence. I have no worries about Joely - she's gorgeous, I'm a very proud mummy ;-)

The other big thing in our life at the moment is the 'Big Build'. We are completely renovating the existing house and have added a two storey extension on the side and a single storey across he back. Needless to say, the house is in complete disarray at the moment and we are living in a building site. People keep saying it'll all be worth it in the end ... the end is not in sight yet though ... It will make a big difference to us though, providing us with a downstairs toilet and shower for Marcus and a play/therapy room for all his equipment.

We are pleased to announce the arrival of Olivia Jay to our family; Lindsay and Bob's lovely baby girl. Marcus and Joely adore her and she really is rather cute! (Cute enough to make me want another one shhhhh, don't tell Gaz.)
We all went to a lovely wedding at the weekend at Ripon Cathedral which brought back lots of lovely memories of our own wedding - EIGHT years ago next month. How fast have those years flown by? Caroline looked amazing and we had a great day.

Finally, Gary will be taking part in the Great North Run later on in the year to raise money for CFC International and research into Marcus' condition - I will come hounding you for sponsors later.
Hope you enjoy the photos and I promise not to leave it so long to blog again.

Lots of love
Sam Weston xxx