Newest CCF Family – Daisy

We love sharing with our supporters the stories of our CCF Families, who they have all helped financially support, taking away their financial burdens to allow them to focus fully on caring for their sick child who is suffering a life limiting condition. Allowing that heavy worry to become a little lighter and make special memories with their child who is not going to live a long life, time is so very precious.

It is our pleasure to tell you all about the daughter of our newest CCF Family 138, the inspirational; “Daisy” This brave little soul was born in April 2025 into the loving arms of her parents Stuart and Mikala. Their worries began at the 20-week scan, where the family were told Daisy had a congenital heart abnormality and after a further scan it was confirmed it was Tetralogy of fallout with absent pulmonary valve.

The family were lucky to have a few precious days at home before things changed.

On the day they were due to be discharged routine bloods were taken. After three failed cannula attempts Daisy’s lactate levels become dangerously high, indicating severe stress and prompting an emergency transfer to PICU. An MRI was done earlier than planned and showed slightly more heart tissue than expected. However, a follow up CT scan revealed that around two thirds of her left lung lacked visible blood vessels, this combined with her heart complications meant that surgery was no longer a safe option. The family were moved to Naomi House for palliative care.

Their lives were shattered when they were told to cherish every moment as it was very likely she had only days to live, her CPAP breathing support was then removed, and the family prepared for the worst. But Daisy, in her incredible strength, continued to fight. A week later Mum and Dad made the decision to transfer her care home. Her condition is still life limiting and medically unpredictable, but she is still fighting.

Caring for Daisy is intense and constant, she requires eight high – calorie NG tube feeds and must be held and watched throughout. Daisy cannot be left unattended, and Mum and Dad spend their time juggling caring for Daisy’s as well as her the needs of her sibling. This intensifies into the evening, as when most households relax and become quiet, Daisy’s overnight care becomes even more demanding. Her parents work a shift system to cope with her feeds, medication and constant vigilance, in case she shows signs of distress or sudden deterioration.

Dad has now been off work for nearly three months, and they have used up any savings they had. The impact on family life has been emotionally, physically and financially hard, their strength to keep going every day is incredible.

Thanks to the amazing generosity of our supporters, we were able to support this brave family and relieve some of the financial pressures they were facing, whilst going through such a traumatic time, we are forever grateful to you all, you are changing the lives and in reality saving the lives of so many.

Thank you to everyone who supports The Charlie and Carter Foundation; this is what your donations and support means. It’s why we do what we do, and we couldn’t do it without you.