• Oopps done it again and forgot to keep updating the blog.... but here's a update of what has happened since my last post.... the Snow Ball (Lleyton's 10th birthday) was a great success and everyone had an amzing time lleyton and his cousins turned up in style in a hummer limo and dressed for the ball... Lleyton had a fab night joining in on the dance floor with everybody and even lost his voice as he was having such a great time... we had a lovely christmas and new year....

    2017 is a big year for us as Lleyton got accepted on a clinical trial for the next 12 months which is amazing for us as we never thought a trial would come in Lleyton's life time but there has and we are thankful that Lleyton can particapate in one..

    we also went back to our happy place Disney World where we had another amazing holiday where we didnt want to come back as Lleyton is always happy when we are there and he always eats like a pig haha.. he got to meet Captain Hook and Mr Smee on a trip that Elaine and family had paid for, for his birthday and he loved every second of this as they are his favourite characters and it was smiles all around (holding back the tears) wish we could live there forever...

    there is only a few months left of the school year and then Lleyton will be going into year 6 last year of primary school (where has our baby gone) and I'm sure he will love it as he always loves going to school..

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  • Well a lot has happend since i last wrote, we went to the most magical place in the world Disney World Florida for Lleyton's birthday and christmas and it was amazing and to have Mickey Mouse sing happy birthday to lleyton was priceless and brought tears to my eyes wish we could stay there forever as its Lleyton's happy place where he always has a smile on his face... we have also started organising Lleyton's 10th birthday and celebrating by having a ball to celebrate his birthday as well as raising much needed awareness for Niemann Pick disease and the ball is now SOLD OUT!!! Lleyton also finished year 4 this week and will be going into year 5 in september this is amazing as to think we thought he might never reach this milestone but he is doing great.... so now it's the 6 weeks holidays and we are going to try and do as many fun things we can with Lleyton and hope we have lovely weather... i have mind block and have totally forgot everything i was going to write down so i will just leave it there for now and fill you in soon with everything that is going on

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  • Well what can i say Lleyton loved Disney on ice and WWE he never had a smile of his face it was amazing seeing him smile and enjoy the things he loves, he's also back at school in a new class and he seems to love it and is doing so well, alot better than this time last year where he only did a handfull of full days but since starting back he has been in everyday.. we have also booked a magical holiday to Disney World Florida for Lleyton's birthday and christmas and we all can't wait it is going to be magical and i think emotional too but I'm sur eit will be amazing but before we going we have the organising of the NPDGUK Christmas Party with some of the families coming to manchester to celebrate and hopefully have an amazing day and we have a hospital appointment coming up where Lleyton will be having a Videofluoroscopy to see how his swollowing is doing, so we have a busy few weeks ahead of us before we go but it will all be worth it in the end, I will update you after our holiday and share some pictures

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  • Lleyton has had a great 6 weeks holidays from school and is now getting ready to go into year 4 on wednesday, he's going in a new class and will be making new friends that I'm sure he won't have a problem with doing.

    Over the holidays we have done lots of days out to Zoo's, Blackpool, Tower, circus, Wales, Pictures, Bowling, Ninja Warriors Uk and othe little trip out to park etc. and he loved every single day we went out his favourite day out was on the 29th september when we went and watched Manchester City play and Lleyton loved it he was joining in with all the sing/shouting in the south stand and never went quiet he was one excited boy, we are going to try and get him to as many games as we can as he loved it that much and let him watch his favourite footballers.

    think we are going to have a few chilled weeks as with lleyton going back to school it will surelly trier him out but we do have 2 planed trips coming up in the up coming months the 1st is to go and watch Disney on Ice in october as you know he is Disney mad and the 2nd is to go and watch his all time favourite wrestler John Cena when WWE come to manchester in November. We can't wait to see his face light up at both events and to make some FOREVER MEMORIES for us as a family.

    i will upload 2 pictures from the match hope you like them one was take before the match with everyone singing 2nd is on the way home.

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  • Since i last wrote on here a lot has changed, Lleyton was rushed to hospital on the 5th september 2014 due to his first seixure that he couldn't get out of for around 2 hours without the help of medication at the hospital where he had to stay in over night for regular checks and slept for over 15 hours, now he is on 2 medications trying to keep the seizures under control.

    Lleyton turned 8 on his birthday where he went bowling with his family and loved ever minute of this as love watching all the kids play.

    Christmas 2014 it gets harder every year in trying to find things to buy Lleyton as he has most electricals as one boy can have so we went for his next favourate thing (FOOD) where we did him a really big food hamper that had all his favourite things that he love and also dvds and books, soon as he seen the hamper he got stuck straight into it and was very happy which made me and Lee happy :-).

    New years eve we spent a few days at Lleyton's nana Hayleys caravan with his family where we celebrated the new year all together and went out for a meal on new years day.

    Sadly on the 9th April Lleyton lost his Great Grandad Barry (Lee's grandad) and this was a great shock to the family and very hard for them all, it was a very bitter sweet day as when we found out there grandad had died we were told the news that Lee's cousin Jamie had give birth to the beautifl Alexis and we beleive that Barry was watching over them both to help Jamie through the few days of labour she had.

    after the sadness of Lee's grandads passing we just wanted to spend some family time together away so we booked a holiday to the Holiday Village Costa De Sol where we spent 11 days of fun in the sun and Lleyon was so happy and loving the water fountains and entertainment and being cheeky and helping himself to the crisp from behind the bar hah but now we are back to reality and Lleyton is back at school with his friends,

    we went to Lleyton's assembly where his class was showing us what they have been doing in there lessons, by parading around in the hats they have made and sang and signed along to a song then played instruments to another song were they had to do there instrument at the right time and Lleyton is sat there with his bells and as soon as it came to his bit he started shaking his bells and I just burst into tears of pride and sadness at the same time knowing what this horrid disease is doing to my child it is killing me inside.

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