Andrew Palmer
Daisies for Daisy
Fundraising for The Lily Foundation
Story
Daisies for Daisy. You can find us on Facebook.
https://www.facebook.com/groups/502046443231620/
I started the project Daisies for Daisy in honour of our gorgeous daughter Daisy who was diagnosed with Mitochondrial disease in August 2014. I want to raise awareness and funds for research into Mitochondrial disease, In the hope that one day there will be a cure for this debilitating disease.
Mitochondrial disease is life limiting and deteriorative. There is currently no cure just supportive treatments like seizure control and physiotherapy. More children die from Mitochondrial diseases than all childhood cancers combined. This is because more research is needed! This can not happen without funding and this is where you can help.
Before I was a full time mummy I was a full time designer/glass maker. I want to continue to put these skills to good use. I would love if other makers and/or enthusiastic crafters would like to help in any way perhaps with fund raising ideas or donations of work. Or even if you just feel like making a donation. Anything at all would be greatly appreciated.
We have been making various Daisy inspired crafts and selling them for donations towards several mitochondrial disease charities. I have also hosted a pop up café and crafts on Plymouth Barbican. Watch this space!
This is our poorly Daisy story (a very shortened version)....
In march 2014 after having had a bad cold for a few weeks Daisy got very poorly very quickly. Daisy had seizures that were effecting her breathing so had to be taken to Bristol Paediatric intensive care unit on a ventilator. Daisy spent a while in PICU having numerous tests and scans until it was discovered she had suffered from encephalitis (swelling on the brain). When Daisy finally came round she wasn't quite herself. She was incoherent and unable to see, hold her own head up let alone sit or stand. After six months of hard work and determination from Daisy and everyone who supports her Daisy was doing well. She was starting to speak again, crawling confidently and pulling herself to standing and she was even walking with a small walking frame. We thought we were very close to her taking independent steps.
Sadly shortly after this time Daisy started having seizures again and slowly Daisy's condition has been getting worse. She is such a strong cheeky little character who has been through so much and had so much taken from her already in such a short space of time but keeps on smiling and trying. She doesn't know or care about her limitations..
It wasn't until August 2014 that we were faced with the diagnoses of Mitochondrial disease. We've been told that the future of our little girl is an uncertain one but contains a degree of deterioration before Mitochondrial disease takes her life. All we can do is continue to love her in the way we do and live in hope.
Thank you for taking the time to read about Daisies for Daisy. We appreciate your support.
With Love, hope and thanks.
Emmy-Gai Palmer
For more information on mitochondrial disease please see the Lily Foundation website: www.thelilyfoundation.org.uk
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