about us

Pride In Lleyton Appeal Raising Awareness & Funds for Research into NPD type C

this all started by trying to raise enough money to send LLeyton and his parents to Disney world Florida,

whilst Lleyton still had full working memory and was well enough to enjoy and appreciate the magic of the Kingdom.

Elaine

Hayley

Gayle

^{please note:}^{we are not A Charity,}^{we are fundraisers - Thankyou}

^{new website check it out}

^{^{http://www.prideinlleyton.co.uk/}}

microsoft are making changes and this site will have to start paying soon, so we are going to try and transfer all our stuff from this one to one hayley has bought "pride in lleyton" name for - please be patient while we are intransition Thanks xx

^{GRAND TOTAL COMING SOON}

Lleyton’s Ladder 2012.

Can you help us reach the heights for Lleyton? PLEASE.

By donating your unwanted gifts at Christmas to the “Pride in Lleyton Appeal” you can help Lleyton & his family get to the National Institute of Health in Maryland USA so he can take part in vital trials.
We can use your gifts as raffle prizes or auction items at our various events through out the year.
We all get gifts that are unsuitable or lets face it, we just don’t like them? If this is the case will you please let us know and we will collect and use them at our events.
If you are lucky enough to receive gifts you like but would still like to help the appeal please let us know – you could maybe get your boss to donate something or you may want to attend our events with your friends in 2012 – no offer refused [if you can get some of your friends to attend, we could do a deal – mates rates?]

Helping us reach our goal – PLEASE DONATE XXXXX – time is not on our side?

We need to fill each rung with a gift or 2, but you will have noticed that it doesn’t have an end – it’s in the clouds? So we need to keep on going till we get their?
Thank you for helping “Pride in Lleyton Appeal” and showing your support xxxxx

any other advice greatlly recieved xx

if you have picture's from any of our event's you would like to share with us please send them to lleyton@hotmail.co.uk

with a little info [who's on them & where they were taken] and we will put them on the web site - thank you xx

Lleyton Macaulley Coombes

Hello my name is Lleyton Coombes.

I was born in Hope Hospital Salford

on 17^th December 2006.

My Mummy is called Joanne and my daddy is called Lee,

I have a little doggy called Toodles. I have a very big

extended family who all love me very much.

I go to school and I love Mickey Mouse, Video games

and WWE Wrestler John Cena. So why am I so special

that all of you want to help me and children like me????????

Well when I was a tiny baby the doctors told my mummy and

daddy that I have Niemann Pick type c, and it’s very rare

and not many people have it. That’s why I can no longer talk,

why I cannot learn to read or write, why I cannot dress myself,

go to the toilet and one day I will not be able to walk, see or hear.

If I ever grow up I would like to be a wrestler like John Cena,

or maybe a chef like my daddy, but at the moment there is no

cure for my illness and the doctors are trying really hard to find

a cure to save me!!!

I may need to go to a place they call America soon, as they may

have some medication that may help me to stay with mummy and

daddy a bit longer, but it costs lots of money to get there.

My Family are making sure I have lots of fun, and raise

money to help me and children like me................ CAN YOU HELP!!!

Please get in touch..........Love Lleyton xxx

**********************************************************************

after 6 months if intensive tests i was diagnosed with

Niemann pick Type C, this is neurological illness that

is life limiting and is a very rare disease,

life expectancy 10 / 15 years of age, those affected

will usually develop dementia as a symptom of the disease.

There are approximately 50 children diagnosed with this

condition in the UK and 500 worldwide Because of this

there is NO Government funding.

We need to raise awareness & funds for research into

the FATAL condition & we need your HELP.

Symptoms are;

*Enlarged spleen
*Enlarged liver
*Learning difficulties and progressive intellectual decline
*Seizures
*Slurred, irregular speech
*Sudden loss of muscle tone which may lead to falls (cataplexy)
*Tremors
*Unsteady gait, clumsiness, walking problems (ataxia)

Most of the symptoms are similar to Alzheimer’s because of this

it has been dubbed - Baby Alzheimer’s

If you require proof of Lleyton’s Illness we can get his

clinical research nurse to contact you, she is located at the

Willink genetics unit,

6th floor,

Central Manchester Children’s/St Marys Hospital in Manchester.

Currently there are about 100 children in the country with

this condition so the Government will not assist.

Lleyton started to show some symptoms of this illness

in 2009 and the fundraising campaign was started,

we hoped we could send Lleyton & his mum Jo and dad Lee

to Disneyland Florida while Lleyton still had full working

memory and could fully enjoy the experience.

After reading about Lleyton in the local paper

Colleen Nolan and husband Ray Fensome allowed this

to happen sooner rather than later by donating enough

money to pay for trip out-right and the family

went to Florida in September 2010,

Because we had already started the fundraiser wheels

in motion for the event we carried on and

Sacha Louise Parkinson – AKA – Sian from Coronation Street

helped by attending this event and the money raised

to be shared with Niemann pick organisation a cheque

will be presented to them at the summer ball and some of

the money went towards purchasing a special buggy

that Lleyton needed.

We would like to raise money now to help Lleyton and his family fly to the National Institute of Health in the USA to participate in Clinical Trials of Cyclodextrine. These will be new trials that have been given the go ahead, but we are unsure when this may happen, we are hoping it will be no later than 2012. The NPDG will pay for 1 parent to accompany Lleyton to USA so we are raising funds to aid the other parent to also go we don’t know how long they will be in USA it could be anything from 2 months to 12 months

We are looking for Individuals & Companies to donate items & or Expertise as we are in the process of arranging several events which need venues and or raffle, auction items and some times food

We would also hope that a well known face could help us raise awareness if you know anyone who would be willing to plug the Cause let us know

Donations

Mobile 07703532069 & 07894506168

http://www.justgiving.com/prideinlleyton/?fb_ref=fundraising-page-top&fb_source=profile_multiline

Email lleyton@hotmail.co.uk

Lleyton’s twitter - @prideinlleyton

Up Dated Thursday, March 29, 2012 09:41:39 PM

Lleyton has now

been accepted to

take part in research studies,

the criteria for trial's of Cyclodextrin has not been released yet, but we hope it may help if lleyton is already known

to them by taking part in the 6 monthly studies at the National Institute of Health, in Maryland USA

******************************************

Lee Coombes a Chef by trade

Lee had osteosarcoma in his tibia at 15, was treated at Christie

young oncology unit, RMCH and Birmingham orthopaedic hospital,

and then again at 17 he had secondary metastases in his lungs

from

the bone cancer, again treated at Christie Y O U, and wythrnshawe hospital. he is 25 in may and still cancer clear.
We realised there was something wrong when he got studded by

his friend at footie, but the swelling did not go down so we took

him to

A & E where they realised there was something not right and

sent us to RMCH.

Lee met Jo when he went back to college after his treatment and

they were on the same catering course at della salle college also

in Salford. They found out she was expecting a year later.

Jo Gresty also in Catering

Joanne Louise Gresty also Born in Hope Hospital 11/08/88
went to Langworthy road primary & Buile Hill High then attended Pendleton college where she met Lee on a Hospitality and Catering Course
Jo has stayed in Salford Working at Burger King, Imperial War

Museum, White Horse, Texas chicken and is now full time carer to

her son Lleyton.
Jo is 1 of 5 girls she also have 4 nieces and 2 nephews and in the

limited amount of spare time she has she help run a Morris dancing troupe in Swinton and has danced for over 10 years herself,