Freddie’s Story
At just five days old, Freddie was diagnosed with lissencephaly, a rare congenital condition causing severe developmental delays and seizures. He also has Miller-Dieker syndrome, a genetic disorder with no cure. Now three years old, Freddie continues to defy expectations after doctors feared he wouldn’t survive past six months. Despite his challenges, Freddie is full of smiles and laughter, and has a mischievous sense of humour. His mum, Dana, is a single parent and cares for him alone. She gave up her teaching job when Freddie was born to look after him. It’s incredibly tough at times, but Dana made a promise never to cry in front of Freddie, saying: “His life is so short that he shouldn’t have to see me cry”.
At home, Freddie is supported by the Life Force team, including Lori, his palliative care nurse, and Alison, his respite nurse. They do arts and crafts together, and he loves messy play. With the Life Force Fund up and running we can carry on bringing fun and joy to Freddie’s short life - and help countless other children too.
Local families are going through the toughest times imaginable
Whittington Health NHS Trust has a team of specialists - The Life Force Team - who provide care and support to families with a terminally ill child, in their own home. This dedicated team consisting of nurses, play therapists, psychologists and respite nurses, is doing everything they can to bring comfort during the most painful times. Your donation would mean that the team can purchase what these families need, when they need it. Whether that’s art materials for messy play, a final trip to the cinema, or a thermometer to check for temperature spikes, your support will make a difference during the toughest of times.
A note from Lori, Children’s Clinical Nurse Specialist
On a typical day I can go from managing end-of-life care for several children, to supporting parents as they navigate the healthcare system, to responding to emergency callouts, to attending a memorial service for a child that’s died. It’s heart-breaking but it can also be inspiring, fulfilling and life-affirming.
Often, parents have had to give up work to care for their child, leaving money tight. Some are living in social housing or homes not suited to their needs, cramped, with rooms taken over by medical equipment. Juggling the care of their child alongside other siblings can be incredibly tough. So when something small could make a difference, like an extra pillow, a piece of equipment, or even a simple treat, we try our best to provide it. Sometimes, we reach into our own pockets to pay for it, but it’s not always that easy. That’s why we urgently need the Life Force Fund.
