Ivy, aged five, was born with Di Georges Syndrome (22q11 deletion), a rare genetic fault which can cause children to have heart defects and she has undergone heart surgery alleviate problems. It can also cause learning difficulties and a cleft palate and Ivy may lose her hearing.
Ivy and her family were invited to Leicester’s Stamford Court Conference Centre on Wednesday along with the other shortlisted finalists for the BHF’s Midlands Supporter Day awards.
The Fighting Spirit Award goes to an individual or group of people who have been affected by congenital heart disease and used their experiences as a force for good.
Ivy, along with 10-year-old big sister Lily and dad Lee jointly received the award, shared with another person on the shortlist after a public vote.
The BHF said: “Everyone who was nominated is very special and we are proud so many amazing people have the chance to be recognised for their fight against heart disease.”
Ivy is now in the Reception Class at William Alvey School and settling in well, learning to cope with the rough and tumble of the normal
school day and making lots of friends with children and adults.
Just before Christmas Ivy helped organise a whole school non-uniform day to raise funds for the MAX Appeal which supports families with children with DiGeorge’s syndrome. Ivy also took part in a special ‘Have a Heart Day’ assembly as part of their campaign to keep Glenfield
Hospital children’s heart surgery unit open.
Her mum Dorne added: “My sister Nicola nominated all three of them.”
Lee has done lots of charity cycle rides for the MAX Appeal and Lily has been very supportive. Proud Dorne said: “Lily and Ivy did an assembly at school about heart disease and how it impacts on them and Lily was recognised for learning sign language.”
Dorne said: “It is great to get recognition for both kids. Lily takes everything in her stride. She is old before her time because she does what she does and is so supportive and if you can get the word out there about heart disease you can change things. Lee does so much as well.”