Main fundraiser photo

For the love of Lilly

Donation protected
Thank you so much to everyone who have organised fundraising events and challenges to raise money for Lilly. Here is a page for us all to use to collect sponsorships and donations.

First event is on Sunday 13th March. Joe Fisher and Lee Blades will be running the Silverstone half marathon! Thank you so much and good luck xx

Lilly's story...
Lilly was under a year old when she got her diagnosis of cerebral palsy. It was so daunting for us all, especially our beautiful little girl, it felt as if our lives had stopped as we came to terms with the diagnosis. Within weeks, Lilly had a host of medical professionals assigned to her care and well-being; we had multiple weekly appointments to attend and lots of equipment taking over our house!

With our love, belief and the constant care from the team around her, Lilly began to thrive and her personality began to shine through despite everything she was going through.
Lilly, is now 5 years old, she is a happy, bright girl, our little ray of sunshine! She has the biggest smile, which lights up any room when she arrives. Her charismatic nature, and wickedly funny sense of humour make her a joy to be around, she draws people to her, and is utterly beautiful, both inside and out.

Lilly’s physical disabilities mean that she requires sophisticated, expensive equipment and constant support to ensure that even her most basic needs are met. She has recently been assessed and was deemed suitable for a powered wheelchair, it will be arriving soon, and will provide Lilly with improved accessibility and experience to a whole new world, increasing her levels of independence too. Lilly’s independence is always something we have encouraged, allowing her time to have a go, her perseverance amazes us every single day, she will never give up, it is the determination we see in her eyes and little face that keeps us going, so we are compelled to keep trying too, just as hard, to give her the best life chances that we possibly can.
There is so much we would love Lilly to be able to do, however we have accepted that things for Lilly will never be simple, such things as riding a bike, as many 5 year olds are perfecting at this very moment will never be a reality for her. There is equipment designed specifically for children with Lilly’s needs, however it is very expensive, as we have found with anything that makes her little life easier. Something like this would be an amazing asset in her life giving her a chance to play!

The most challenging barrier in Lilly’s life and the enabling of her independence, is communication, she has no speech, however has cognitive ability, and complete understanding of a 5 year old. Her inability to express herself is extremely frustrating for her. There are times where Lilly is desperate to tell us something, we have to guess until we find out what it is she wants or needs. When we guess correctly she has the biggest smile on her face, she must feel so relieved after her struggles to let us know. As family it is one of the most heart breaking things to bear, when she is trying to tell us something and we just can’t help or understand the what, the why, the how or where, straight away. It is particularly difficult if she is unwell or has pain.

There is equipment and software available which can help Lilly communicate. She uses an eye gaze communication aid at school which she has limited access to. However, in the short time that Lilly has been able to use it she has used it effectively to communicate to staff and peers.
Something like this would undoubtedly change Lilly’s life beyond anything we could imagine, we tell her that we love her every day, parents take it for granted that their children can say it back, we imagine a world where Lilly can express her emotions freely, and without constraint…at the moment it is only a dream…the big dream of having full time access to her own eye-gaze communication aid which she can use at home and at school.

Lilly recently spoke through an eye gaze communication aid at her school assembly to tell her peers and teachers about her favourite toy. This opportunity gave Lilly such a confidence boost, she was so proud of herself and she loved every second of it! I could see it in her eyes and smile when I spoke to her about it after school, I could see how proud she was, she’d at last found a voice, albeit for a few moments it was a little taste of what things could be like.

We are hoping to get as many people as we can to support us in our aim to provide Lilly with her own voice and independence.

Thank you from the bottom of our hearts for taking time to read Lilly’s story, so many people could learn so much from our beautiful princess, who has so much to give to her family, friends, school and community if she was just given a chance.

Organizer

Leona Desforges
Organizer

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