Birmingham family of seriously ill little girl appeal for help to grant her dying wish
Bella Rose Taylor has a rare degenerative disease and has less than a year to live
Last updated 29th Apr 2022
A family from Birmingham's appealing for the public's help to grant their five year old daughter's last dying wish.
Five year old Bella-Rose Taylor, from Oscott in Birmingham, lives with a rare degenerative condition and is waiting for her wish to “feel the wind on her face” to come true before time runs out.
Today (Friday 29th April) marks World Wish Day and Bella-Rose's family are appealing for the public to support Make-A-Wish UK, which is dependent on donations to grant life-changing wishes for critically ill children.
Bella-Rose, who was born on Boxing Day in 2016, was transferred to Birmingham Children’s Hospital at just 3 weeks old. After a number of tests doctors confirmed she had a hole in her heart, as well as kidney failure and brain damage.
The five year old's mum, Toni explained: “It’s a mutation to do with the TRAPP gene. We were told that Bella was one of only five people in the world with that exact mutation. We had no information – doctors and professionals barely knew more than us. We had no idea what to expect.”
Now aged 5, Bella’s condition has begun to deteriorate, and her parents have been told their time together is limited. Unable to see, communicate or sit up by herself, Bella requires round-the-clock care. In December 2021, the family were referred to Make-A-Wish UK by Dr Larissa Kerecuk, Rare Disease Lead at Birmingham Children’s Hospital.
“Wishes can have a very beneficial effect on mental health as it gives the child and their family psychological resources to be able to deal with difficult times,” said Dr Kerecuk. “I have seen the magical effect that a wish can have on the family unit and how it can bring everyone together.”
“One thing that Bella loves is the feeling of wind,” said Toni. “Whenever we get the fan out, she just loves it! At CBeebies Land she’ll be able to sit on my lap and feel the rides – feel the wind on her face."
'Our time together is short - it's all about the memories'
Toni and Ant are hoping Bella-Rose will be well enough to travel to CBeebies Land in June for a short holiday, courtesy of Make-A-Wish UK, alongside siblings Charlie, 4, and Emelia, 2.
Toni says; “Her brother and sister love her so much. We know that, as hard as it will be for us to lose Bella, it will be incredibly hard to explain to Charlie and Amelia that their sister has gone and isn’t coming back. I hope that Bella’s wish will be something for us all to remember and treasure for the rest of our lives.”
Across the UK, 503 children like Bella-Rose are living with critical conditions and waiting for their wish to be granted.
Jason Suckley, Chief Executive at Make-A-Wish UK, said: “When a child like Bella-Rose is diagnosed with a critical condition, the joy of childhood is brought to an abrupt end with treatment plans, appointments and worry taking over. The power of a wish – in this case, a family trip to a theme park – can revive a childhood stolen by critical illness, by making joy-filled memories that will last a lifetime.
“Children like Bella-Rose have so much love to give,” said Toni. “Nothing about our life is limited, although she has a life-limiting condition. She’s taught us so much – she's shaped us as people. We would have 10 of Bella if we could."
To support Make-A-Wish UK please visit www.make-a-wish.org.uk/worldwishday and help grant life-changing wishes for children like Bella-Rose across the UK.