In April 2024, 9 year old Daisy died from Rett Syndrome.
Rett Syndrome is a neurological condition which most often strikes previously healthy girls between their first and second birthday, leaving them with multiple disabilities and medical complexities for life.
Daisy is a twin to her sister Martha, now 10 and has a younger sister, Nora, who is now 6 years old.
When Daisy was born, Mum Emily raised concerns on her struggling to feed but was advised by health professionals that her feeding difficulties were due to Daisy being the smaller twin.
As time passed, it became clear that Daisy was not meeting the typical milestones for her age.
Her family observed that she wasn't walking or talking, and she still had difficulty with feeding. After consulting several doctors, Daisy was eventually diagnosed with Rett Syndrome at the age of 2.
Mum Emily reflects on how Rett Syndrome affected Daisy;
“Rett Syndrome often comes with a regression period where previously learnt skills are lost and more complex health conditions can develop. Daisy lost her ability to eat orally, her hand control deteriorated, and she developed severe epilepsy.”
Despite Daisy’s condition, Emily describes her as being content, with a smile that was always infectious.
“Despite all the challenges that came her way, Daisy was one of the most content people I have ever met. She loved people and was known for her contagious smile and love of music. Her favourite tunes always made her happy, no matter what she was going through. She was so strong.”
As Daisy's health gradually deteriorated over the years, the struggle to recover from frequent chest infections became challenging for her family to manage.
When Daisy was 7 years old, her family was introduced to palliative care and doctors informed the family that Daisy may not have long left to live.
Despite this, true to her nature, she continued to fight and was able to spend several more years creating lasting memories with her family in the comfort of her home.
When Daisy was 9 she suddenly deteriorated overnight and her family had to make the impossible decision to transfer her to Charlton Farm children’s hospice for end of life care.
Emily describes how Charlton Farm supported their entire family.
We were fortunate to get Daisy and our family to Charlton Farm in time to ensure Daisy was comfortable and to spend her final hours in the peaceful surroundings of the hospice, surrounded by those who loved her.
“Daisy’s sisters were entertained by the Sibling Support Team, giving us the time and space to be with Daisy and say our final goodbyes.
“This was the worst day of my life, but everyone at Charlton Farm was there to support us through that day, and the weeks and months that followed. I cannot emphasise enough how important it was to know that Daisy passed in a peaceful, comfortable place, with skilled and compassionate staff by our side.
Daisy’s life was short, but she left a lasting impact on so many people.
As the family approach the 1 year anniversary of Daisy’s death in April, they have organised their first ‘Daisy Day’ to spread Daisy’s love far and wide.
“We wanted to mark the 1 year anniversary of her death, not only to keep her memory alive but also to raise vital funds for Children’s Hospice South West, who cared for Daisy and our family so wonderfully when she died.
On Sunday 27 April 2025, we are going to have our very first Daisy Day.
“With the help of some friends, I will be selling hand crafted crochet Daisy badges that I hope as many people as possible will wear with pride on the day.”
If you would like to support the family by wearing a Daisy, in memory of Daisy, please visit the link below:
www.justgiving.com/page/daisyday
