React

React is a unique children’s charity that gives depth to short lives. The average life-span of a child we support is just ten years – an unimaginably devastating diagnosis for any parent. Life becomes extraordinarily difficult: many parents give up work to become full-time carers, stretching household budgets and adding immense strain to the whole family. At this point, many struggle to afford the essential care and equipment their child needs.

React provides a wide range of support – from specialist wheelchairs, beds, baths and mobility aids to everyday household items such as washing machines and tumble dryers. We can also offer mobile-home holidays and, heartbreakingly, help with funeral and memorial costs. Our aim is to bring comfort, dignity and the chance for every child to participate in life as fully as possible.

Each child’s needs are unique and often change over time. Degenerative conditions can mean the loss of previously acquired skills, such as speech or mobility. This is frightening for children and their families, but specialist equipment can ease distress and slow decline. React acts fast – offering a simple, speedy application process to all families. When a child’s life is short, there is no time to wait on lengthy lists or for red tape to clear.

Your support will help us respond immediately to more families caring for a gravely ill child who have nowhere else to turn. Thank you.

I am honoured to present this month’s BBC Lifeline Appeal for React, a charity that has been close to my heart for more than ten years.

React is a unique children’s charity whose aim is simple: to give depth to short lives. The charity provides a wide range of essential equipment and aid for terminally ill children, that is unavailable through any other source.

What distinguishes React from many other children’s charities is the speed at which it provides assistance to its families. No family is ever kept waiting for more than 48 hours, with some even receiving help the very same day as their request. As a proud Trustee, I have seen firsthand what an invaluable difference their service can make to the comfort, dignity and quality of life for children across the UK who are living with life-shortening illnesses. 

This appeal showcases the stories of three wonderful families React has assisted, and I hope you will join me and consider supporting their important work.

Two-year-old Arthur needed immediate resuscitation and ventilation when he was born and his mother, Christina, describes him as a remarkably strong little boy. Living with neonatal encephalopathy and developmental delay, he is unable to support himself without specialist postural equipment. Mum, Christina had been using make-shift seating, consisting of an array of pillows to keep him upright. 

An occupational therapist strongly recommended two specialist postural seats: a ‘P-Pod’ and ‘GoTo Seat’ to provide Arthur with somewhere comfortable and supportive to sit both when at home, and when out and about. React stood as the only option available to Christina to provide these vital seats for her son, and the charity was quick to provide these two items, greatly improving Arthur’s comfort and quality of life. 

Harvey is 16 years old and lives with a rare metabolic disorder known as CDG. Not long after Harvey was born, he began to experience seizures and had to be placed in a medically-induced coma. Despite suffering from an array of symptoms including muscle weakness, movement disorders and developmental delay, it took almost four years for Harvey to receive a clear diagnosis.

Harvey remains in a very vulnerable condition and his complex care routine has taken a physically and mentally draining toll on mum Rachel and family. When Rachel heard that React can offer respite holidays for families caring for terminally ill children, she jumped at the opportunity, and the family were delighted to visit the charity’s mobile home in Scotland this August. React holidays provide a break away from the usual care routines of home, allowing not just the child, but carers and siblings the chance to create precious memories, bond and unwind in a novel location by the sea.

Although it was thought from 3 days after Lana was born that she most likely had a neurological illness, the exact cause remained unclear until she was four years old, when doctors discovered it was due to an extremely rare condition known as an FGF12 mutation. Lana is now 16 years old and experiences severe seizures on a regular basis.

Taking every day as it comes, Lana and her family have always found walks with nature to be the best medicine and Lana has a particular affinity for country walks. 

Lana uses a wheelchair and needs to take with her a supply of medical equipment when out and about, which makes the heavy wheelchair incredibly difficult to push, even over short distances. A wheelchair powerpack was suggested by a physiotherapist at a local children’s hospice. 

After submitting a quick application to React, Sue was delighted to hear the charity could help. The new wheelchair motor takes all of the strain out of pushing Lana’s chair, enabling the family to spend much more time outdoors and significantly improving Lana’s mobility and mental wellbeing.