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£612raised of £1,000 target by 26 supporters

Weʼre raising £1,000 to help fund private speech and language lessons to get Lillie communicating

Willenhall, West Midlands, United Kingdom

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Story

Lillie Windsor was born ten weeks early on 15 July 2011 weighing 3lb 14oz. As a result she suffers quadriplegic spastic and athetoid cerebral palsy, chronic lung disease of prematurity and is colonised with pseudamonus. She spent nine weeks on the Neonatal Unit at New Cross Hospital before being allowed home. Lillie could not swallow so she was fed via an ng tube down her nose.

In her first year the longest period Lillie spent out of hospital was three weeks. She had severe reflux which was continuously entering her lungs causing aspiration pneumonia. This is a life threatening condition.

In July 2012, just five days after her first birthday, Lillie had a life saving operation (nissen funduplication and gastrostomy) to stop the reflux. At the same time she had a peg tube fitted which means she is now fed directly into her stomach and no longer has an ng tube down her nose.

In December 2012 we finally got Lillie's diagnosis. Her condition means she cannot sit unaided, stand, crawl, walk or talk.

In 2014 we raised £6800 for an Eye Gaze with the help of the local public. This is a computer which Lillie is learning to control using her eyes. At the moment she uses it to play games but in the future she will move on to using it as a communication device. We had to fundraise for this as Walsall Council do not fund them even though their neighbouring council Wolverhampton do. We are extremely grateful to everyone who donated and helped us get the Eye Gaze in time for Christmas.

We also had to raise £11,000 to buy an innowalk. This machine completely supports the user but helps them to move their legs to exercise. It reduces the spasticity the user suffers which means they can instead concentrate on doing everyday things like trying to hold their head up, trying to grasp items etc, instead of concentrating on trying to relax their muscles first. It can improve digestion, sleep pattern, muscle strength, the pain associated with spasticity and much more.

We then had to raise £1285 for a specialist trike and £2197 for a specialist car seat for her. All of this fundraising took place within twelve months.

Lillie is now desperate to communicate. She has a button attached to her wheelchair which can have a message recorded on it. It is currently used as a 'yes' button so that she can answer questions. It isn't the best form of communication as she can only answer questions and cannot tell someone what she wants. Also she isn't accurate with her arms and she struggles with limb control. The eye gaze is a much better form of communication as she has full control of her eyes and you can use it to form sentences!

Not only is the eye gaze a form of communication, it can also be used to type word documents, send emails, use the internet, etc. It is the same as a normal computer just powered by the eyes.

Unfortunately Walsall Local Authority are not trained in eye gaze technology and their speech and language therapists will not help with Lillie's communication. We are now employing private speech and language therapist to help with the eye gaze training. This costs £50 for a one hour lesson and she has a lesson every two weeks lasting between one to two hours depending on what she needs to work on. So far Lillie has had two lessons. Her third is booked for half term. She has come on so much in the last month learning all her eye gaze skills needed to begin the communication side.

As Lillie attends New Invention Infant School (currently year two) she has to remain under Walsall speech and language so this will be a long term thing that we will need to pay for to help get her communicating which will in turn help with her education.

We have some family friends who hold a stall at a car boot every month to help raise money for these lessons.

We also have one of Lillie's friends who is currently being sponsored to have her haircut. Jesse-Mai is 9 years old and has never had her hair cut. It is down to her waist. On 28th October she will be having it cut to her shoulders. She is donating the hair to the Little Princess Trust. She is collecting sponsorship to help fund Lillie's eye gaze lessons.

Lillie is like any other six year old girl.  She  loves  her  friends,  shopping,  her  dance  classes,  little  mix,  clothes  and  makeup.   You  can  follow  her  page  at  www.facebook.com/lillieseyegazefund to find out more about her. 

Lillie's express and star articles:-

http://www.expressandstar.com/news/2014/10/23/parents-of-disabled-girl-to-raise-7000-for-equipment-as-they-live-outside-qualifying-boundary/

http://www.expressandstar.com/news/2015/01/07/anonymous-cash-donation-helps-disabled-three-year-olds-dreams-of-communicating-come-true/

Her story has also appeared in the Bilston Magazine, Bloxwich Magazine,  Wednesfield  Magazine and Willenhall Magazine.

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Updates

5

  • Kimberley Windsor4 months ago
    Kimberley Windsor

    Kimberley Windsor

    4 months ago

    Daz's London Marathon medal! X

    Update from the Page owner

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  • Kimberley Windsor4 months ago
    Kimberley Windsor

    Kimberley Windsor

    4 months ago
    Update from the Page owner

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  • Kimberley Windsor5 months ago
    Kimberley Windsor

    Kimberley Windsor

    5 months ago

    On 22nd April Darren Hill will be running the London Marathon to help raise money for Lillie! X

    Update from the Page owner

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10 months ago

Kimberley Windsor started crowdfunding

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Page last updated on: 4/28/2018 3:18 PM

Supporters

26

  • Tony Hill

    Tony Hill

    Apr 28, 2018

    Well done bro

    £20.00

  • Tracy Adcock

    Tracy Adcock

    Apr 27, 2018

    £10.00

  • Maureen Smith

    Maureen Smith

    Apr 22, 2018

    Good luck, stay safe x

    £10.00

  • DANIEL KETTLEBOROUGH

    DANIEL KETTLEBOROUGH

    Apr 22, 2018

    From all at Davicon Mezzanine Floors

    £250.00

  • Lucy Preston

    Lucy Preston

    Apr 22, 2018

    Good luck Darren! Will be looking out for you!

    £10.00

  • kerry haskett

    kerry haskett

    Apr 21, 2018

    All the best , Kerry & Kian x

    £10.00

  • Lee Duffy

    Lee Duffy

    Apr 21, 2018

    £30.00

Kimberley Windsor

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About the fundraiser
Kimberley Windsor

Kimberley Windsor

Willenhall, West Midlands, United Kingdom

I'm Kim, Lillie's mom. I have set up this page to try to help raise the money we need to get Lillie communicating. She is becoming increasing frustrated and we are getting no local authority help (again!)

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