The Daisy Garland - A Journey of Hope

Joanna McHugh • May 25, 2022

A small charity in Devon, making a huge difference to the lives of children and families across the UK

Set up by Sara and David Garland, The Daisy Garland is the ongoing legacy of their beautiful daughter Daisy whom they tragically lost in 2004, aged 6, to SUDEP (Sudden Unexpected Death in Epilepsy). Since founding the charity 6 months after losing Daisy, the couple have been able to support hundreds of families with children with drug resistant epilepsy, providing the knowledge, guidance and support that they unfortunately did not have access to themselves during Daisy’s life.

Visit their website to read more about Daisy and the Garland family: https://www.thedaisygarland.org.uk/Pages/FAQs/Category/daisy

The James Tudor Foundation’s relationship with The Daisy Garland began in 2008 when they received funding towards placing a Ketogenic Dietician at Bristol Children’s Hospital. A mum desperate to find any solution that would improve Daisy’s quality of life, Sara heard about something called the Ketogenic diet from a friend in the US. Little was known about the diet at the time and nowhere in the UK offered it as a form of treatment. After much research and many conversations with Daisy’s medical team it was agreed that she could try the diet. Sara recalls the change in Daisy after starting the diet was huge.

“Once the diet was established … her development came on in leaps and bounds and we really started to see the little girl behind all of the medication. The diet really allowed us to meet Daisy for the first time.”

The Ketogenic diet is a high fat, low carb, restricted protein diet which forces the body to produce ketones. Ketones replace Glucose as the main fuel for the brain and, for reasons still not entirely understood by medical professionals, this change in fuel source can have an extremely positive impact for children with drug resistant epilepsy, drastically reducing seizures and improving cognitive development.

Since 2004, The Daisy Garland have worked with the NHS to make this dietetic form of treatment accessible to families around the UK. To date they have funded 28 Ketogenic Dieticians and Dietetic Support Workers across 16 NHS trusts which equates to a staggering investment of over £2.5 million in the NHS.

As well as supporting the NHS to provide the expertise, The Daisy Garland provides support to all families who have a child with drug resistant epilepsy, on the Ketogenic diet. Each new family receives a Daisy Welcome Box containing all the essentials needed to get their keto journey off to a positive start. Daisy’s Keto Café is a closed online forum for 750+ families, a safe and secure place where parents and carers can share recipes and ask advice from a Daisy Garland Nutritionist and other keto families. The Daisy Garland website also has a whole host of new and exciting keto-friendly recipes and resources.

Another key lifeline provided to families by The Daisy Garland is grants to purchase night-time breathing (SATs/epilepsy) monitors for children with epilepsy which provide families with huge peace of mind when putting their children to bed each night, knowing that the monitor’s alarm will alert them to any change in their child’s condition while they sleep.

The James Tudor Foundation first provided funding for these monitors in 2013 and since then 34 families have benefitted from monitors thanks to our grants. In total The Daisy Garland has provided over 800 families across the UK with this vital piece of equipment free of charge. The Foundation has recently approved a grant to supply funds for 22 more monitors.

Under their Family Support Programme, The Daisy Garland also offer Mindfulness Training free of charge to mums, dads, carers and health professionals associated with The Daisy Garland. Over 300 participants have benefitted to date with a steady stream of referrals coming in for training sessions taking place in the autumn. To further aid mental health and wellbeing and to help alleviate the cost of living increase, The Daisy Garland has recently launched their Green Shoots Project inviting 45 children and young adults to grow their own healthy low-carb food. With weekly colourful updates and gardening tips, you can follow this project here: https://www.thedaisygarland.org.uk/Event/green-shoots-project

They may be small, but the impact of The Daisy Garland on the families it touches is immeasurable and here at The James Tudor Foundation we are proud to be associated with such a fantastic organisation.

A reflection from our Director:

“Since getting to know The Daisy Garland and working with them to enable The James Tudor Foundation to provide the right funding at the right time, I have been impressed with the dedication of David and Sara to Daisy’s legacy and also the continuing benefit the charity provides. The Daisy Garland is a fabulous charity supporting families and children suffering from a terrible form of epilepsy by finding ways to make improvements to their lives.”

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