Daisys big build

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Daisy is a beautiful 5 year old girl from Ditton in Kent with a very complex background.  At 3 months old she was taken to hospital as she was struggling to feed.  She stayed in our local hospital for 3 weeks before being transferred to the Royal Brompton where it was established she had a multi system disorder that was causing breathing, feeding and movement difficulties.  Fast forward 9 months in the hospital Daisy had 2 major surgeries - a peg for her feed and a tracheostomy.  She is dependant on a ventilator 24/7.  It wasn’t until 2020 that a diagnosis for some of her issues was discovered, a super rare channelopathy called KCNA1 which causes severe epilepsy, breathing and movement issues.  

Daisy has come on leaps and bounds but is very limited by her disabilities when it comes to moving around and for us as a family it is like a military operation having a day out!  She is so determined to join in with her peers and loves being outdoors.

We are looking at having a downstairs bedroom and wet room installed in our family home to allow her the independence she craves.  This means that even when she’s poorly she can be with her family downstairs. 

We have the backing of our fantastic OT and council funding approved by TMBC but the build costs far exceed the DFG (Disabled Facilities Grant). 

Every penny will be greatly received, any idea for fun days, challenges etc also! 

Thank you for reading our story 

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

 

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.

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