Remembering-the-beautiful-brave-lili J part 2

By | March 21, 2016


Remembering-the-beautiful-brave-lili J part 1 was relativity easy to write as I just skimmed the start of the journey, part 2 is harder as I was more emotionally involved, after endless FB nmessage chats with Lili’s strong amazing Mam Amy, and being more interactive with the family, Lili was embedded firmly in my heart and for that few months my total tenacious thought process focused on getting what this beautiful special girl needed to make her a little more comfortable.


The way Lili’s whole family cared for Lili, totally blew me away, she was treated and spoken to the same as every other child in the family, they did not dwell on her disabilities they enjoyed her for who she was, the brave little diva, who could melt your heart or put you in your place with a glance, from them beautiful blue eyes, curtained by those luscious lashes.



The first attempt of fundraising turned a little sour, when an annual event set to donate to Lili was ruined by small minded people who were of the opinion the family should sell their horses to fund the room, this really maddened me, everybody needs time out, galloping through the forestry was Amy’s release, her time to release all the tension of constant caring and go back to her doll refreshed and ready to be the amazing mother she always was. The family was really deflated after this cruel nasty occurrence but it just made me more determined to make the sensory room a reality.

Obviously on line fundraising is the way forward as it reaches so many people, but we couldn’t open a fundraising page without a registered charity number, the only Aicardi society is in the USA so was of no help with this, we approached The Tree of Hope who agreed to set up a fundraising page, so time for my brain to tick over on the next move.

tree of hope


I was doing a Marketing degree and our first task was to create and build a business and any profits could be kept by us, within seconds  I was asking could we donate the profits, within minutes my group and a few others were willing to donate to Lili 🙂

My bossy head went into overdrive, we created a cakepop business, and where the other groups sold to friends and family and just did enough to pass the module, we approached every tutor we could find, plus friends and family, then had a stall in the business block. Being a control freak and the only one in the group with a food safety certificate I ended up making 350 cake pops. When we were adding total profits of groups ours was at least 4 times the other highest total. one group hadn’t sold a load of hats and scarf’s so jumped on that and sold them at a local event.

some groups from other disciplines hadn’t decided what charity to support , so I asked the tutor could I pitch to them in the next lecture. being the oldest pupil by at least 20 years I found it a bit nerve wrecking pitching to a few hundred students, but needs must, so I created a power point presentation, called  Hi my name is Lili J tasker

power 1

power 2

power 3


power 4power 5

The tutor asked for a show of hands of who wanted to support Lili and every undecided group raised their hand, my daughter had come with me, and she said the minute Lili appeared on the white board, she heard a girl whisper “omg I am changing who I want to give the money to” just what I wanted to hear.

There was still more harassing and more fundraising to be done, which I will tell you about in part 3 x

2 thoughts on “Remembering-the-beautiful-brave-lili J part 2

  1. This Mum's Life

    It sounds like Lili had an incredible family, and what an amazing job you did, championing for her cause. I am astounded that people felt the family should sell their horses-how utterly awful. Like you say, everyone needs a release, and I can’t believe they anyone would’ve expected them to do this. Thank you for sharing this part of the touching story with #bigpinklink.

    1. admin Post author

      Lili and her family blew me away,people were very vocal on social media, saying hurtful things, they didnt even ask for help I insisted on helping, just going through part 3, will link it up next week, thank you for comment x #bigpinklink.


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