Livvy’s Ball – Her legacy is love.

 

 

Friday night was incredible, amazing and inspirational all in one.

I was so blessed to be surrounded and supported by some wonderful people.

Livvy’s Ball was an fantastic success and over the next few days I will be sharing so much more about it all.

But lets start with the most important thing, we raised an incredible £1400 to be split between Livvy’s Smile  and Reverse Rett Uk 

I cannot tell you how proud I am of this achievement.

I have been asked to share my speech from the evening, so i thought this would be the best place to start my posts all about the ball.

 

I would first like to welcome you all this evening to Livvy’s Ball. Alan and I cannot express in words our gratitude for each and every one of you for being here supporting this evening.

Those of you here who knew Livvy I’m sure would each have a memory or two to share about her. She certainly left an imprint on those who met her. To those who didn’t get to meet Livvy, I can assure you that the reason you are here has some basis in who she was.

You see Livvy changed who I was, who we all were

If you are here tonight supporting us as work colleagues I can promise you that we now foster because of what Livvy taught us,

my friends whose children have disabilities I can honestly say I wouldn’t be part of your world without Livvy.

Rett syndrome research warriors again because of Livvy.

Deciding how to mark Livvy’s 18th birthday was a easy decision. We knew we had to celebrate and celebrate in style. It had to be something that would represent all that she stood for and that was simply to live life fully.

You see although we only had Olivia for nine and a half years she packed into those years so much. She taught us her family how to love unconditionally, how to make sure that everyone knew how special their were to you.

No hold backs, means no regrets. Knowing that we didn’t have forever gave us the opportunity to stop wasting time and to love fiercely.

To make the moments matter.

 Livvy didn’t hold back anything, well unless you count sharing chocolate biscuits. She loved with all that she had, she laughed as often as possible and she lived wholeheartedly.

So it was a given that her 18th had to be special, had to honour her.

What better way than to have a evening of fun and friendship.

Still it had to be more than just a party we had to to celebrate with a purpose. So that’s why we decided that whilst we were having fun we would also fundraise.

I am as I said so very grateful for each and everyone of you who have bought your ticket to come celebrate my beautiful girlie with me tonight. But I’m going to ask a little more of you. We have been lucky enough to be supported with amazing raffle prices for tonight and I hope that you will buy as many as you can to support our chosen causes for this evening.

So who am I asking you support this evening.

First off we have Livvy’s Smile the charity endeavour that we started in Livvy’s memory. An idea of what we would thought would be one event which has now been running for eight years.

Livvy’s Smile is a memory maker.

When we lost Livvy we were so very grateful for the memories that we had to share. As I said Livvy loved life, from camping trips to ice skating days, from canoeing to barge boat trips we have some incredible moments to hold dear in our hearts. Yet we know that at times creating those moments wasn’t that easy. Raising a child with severe disability isn’t easy, throughout Livvy’s lifetime I personally experienced a lot of isolation and fear. It’s not a case of let’s go here or let’s do that everything took time and planning. With Livvy’s smile we wanted to create memory making days for children with disabilities but also for their families. Host events where siblings could play alongside their disabled sister or brother. Inclusion and fun. We wanted to host events where families could meet others in the same or similar circumstances, building friendships and lifelines of support.

Livvy’s Smile was started to make memories to create moments that children and families would cherish for a lifetime. I’m proud to say we have done that and although some children are no longer with us their families have memories to hold on to. This is something I am incredibly proud of and with your support is something we can continue doing. Making the moments matter.

Our second charity of the evening is Reverse Rett Uk. As you all may know Rett Syndrome is what Olivia had and what we lost her too. REtt syndrome is a devastating condition. It you were to imagine, Parkinson’s, cerebral palsy, epilepsy, autism all rolled into one you may get a little understanding of what Rett Syndrome is. I remember only to clearly Olivia being diagnosed with Rett syndrome, we actually had a late diagnosis as she was four years old. I had been searching the Internet googling her symptoms and had come across Rett Syndrome and simply decided at that point  that she couldn’t have that one. I didn’t want that one. Because back then the future for children with Rett syndrome seemed bleak, there was at that time no real hope. I’m so pleased to say that this isn’t the case anymore thanks to the wonderful work of Reverse Rett syndrome UK and other charities like this the future is brighter. The research is showing real promise that one day there will be a cure for this devastating condition. But of course research isn’t cheap but I promise you it is priceless.

I started a campaign a few years back to highlight Rett syndrome awareness called nomoremeptyarms and this is why I am asking you to support Reverse Rett tonight. My arms will never hold Livvy again but I am determined to do all that I can to make sure that the other parents with children with Rett syndrome their arms stay full.

Reverse Rett UK is simply hope in action.

I won’t go on for much longer now, we do have a wonderful evening planned for you and I wish you all an amazing time.

But I do want to say one thing more.

Life is not measured by the length you live but by the moments your create and the hearts that you touch. Livvy may have only lived for nine years,but the impact she left on others still lives on today in my heart, her daddy’s heart and her sisters hearts and in the hearts of all that knew her.

Her legacy was and always will be love.

I want to thank you all for being here to celebrate that legacy tonight, to celebrate my beautiful girl.

Happy 18th Livvy

Thank you all,

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