What we do
The Daisy Garland charity was set up in November 2004 to keep Daisy’s memory alive and to help other little children like her.
We fund an increasing number of Ketogenic Dietitians who work in National Health Hospitals treating hundreds of children with intractable epilepsy.
We are the only UK charity funding Ketogenic Dietitians - each dietitian costs up to £45,000 per annum. If you think you could help us fund our next Daisy Garland Ketogenic Dietitian go to HOW YOU CAN HELP. Be in touch today.
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The Daisyometer shows how much we have raised so far to keep our Daisy Garland Ketogenic Dietitians in place for a total of 3 years at the Royal Hospital for Sick Children, Edinburgh.
Vicki Whiteley's Presentation at The Daisy Garland Ball, 2013
Vicki Whiteley, Daisy Garland Ketogenic Dietitian at The Royal Manchester Children's Hospital.
The following heartfelt presentation was given at The 2013 Daisy Garland May Ball by Vicki Whiteley, our Daisy Garland Ketogenic Dietitian based at The Royal Manchester Children's Hospital.
Thank you for the opportunity you have given me. The opportunity to provide a service so desperately needed and the chance to help so many families. I feel privileged to have this job.
When I started my position in Manchester I was ready for a challenge, ready to educate and teach, to change practice and to develop a new service. At the time, some children had been on the ketogenic waiting list for up to 5 years, so I set to it, developing guidelines and planning the service. Within a number of months referrals increased bringing new families and new challenges.
The service is now well established and I regularly provide training and support to other health professionals both within my hospital and in the surrounding area. I continue to think and look for new ideas and ways to help and support parents to provide the diet, which at times can be challenging and complex. One of the most rewarding sessions is the ketogenic cookery day, which helps to bring together parents who are already on the diet, giving them new ideas and recipes and also allowing them to share ideas and experiences together. These have been supported by Nutricia SHS and have been facilitated by Neil, a chef who works with them and their products to give new and exciting recipe ideas, which motivate and encourage both parents and some of the older children.
In the last 16 months we have received 47 referrals. 32 children have started the ketogenic diet and 26 are still following it. We also have a waiting list of 12, with new referrals arriving every couple of weeks from all across the Greather Machester and Lancashire area.
The diet is now firmly positioned as a treatment option for uncontrolled or difficult to control epilepsy. But to the families, it isn't just another treatment, it is a glimmer of hope. A chance to take a central role in helping their children. A hope to consider seizure freedom, to consider freedom from medication anf to say hello to a child that they may have lost to a fog of seizures and medication.
From the beginning I always wanted to measure the diet's successs, not just by measuring seizure reduction, hospital admissions and medication reduction. But by measuring quality of life and the impact the diet has on a family. So I have databases and questionnaires and surveys to collect as much information as I can. All these measures and the research we are involved in are very important. But for me, the most important thing, is hearing the parents feedback when I speak to them in clinic or over the phone. Hearing the happiness and relief in their voices and hearing them say thank you.
- Hearing that Noah who has had multiple seizures daily from 3 weeks of age is now 18 months old and seizure free for 6 weeks.
- Hearing that Kian is making eye contact and enjoying the world around him.
- That Toby has enjoyed his birthday party for the first time at 3 years old.
- Hearing that Stephanie only has seizures when she is unwell, instead of 30-40 times per day.
- That Ruby has that sparkle back in her eyes and is enjoying going to school again.
- Hearing that Sam is catching up with his development.
- That Lottie was able to attend her nursery graduation.
- Hearing Alfraz is vocalising and laughing, which he hasn't done in 2 years.
- Knowing Grace has successfully weaned down 3 anti-convulsant medications.
- And when Thomas tells me that he doesn't have the 'wobbly do's' now and that he loves his keto pizza!
The list goes on and on, and this is all because of the ketogenic diet and more importantly because of The Daisy Garland.
All my families want to send their love and thanks to Sara and David and all those who have supported and donated to the charity. They want to say thank you for the difference you have made to their lives and for giving them a chance and an opportunity. They want you to see their children smiling and they want the charity to be able to support other families in the same way, to see if the diet can work for them.
Daisy Garland Ketogenic Dietitian
NB Vicki has recently been shortlisted for 'Paediatric Nutrition Professional of the Year' in the CN awards. The award is in recognition of the hard work Vicki has put into setting up the Ketogenic service at The Royal Manchester Children's Hospital. The result will be announced in our Autumn Newsletter which is to be published in September 2013.< Previous Story | Story 13 of 29 | Next Story >
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