By Gareth Shoulder @GarethShoulder
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Videographer / director: Marcus Cooper
Producer: Gareth Shoulder, James Thorne
Editor: Athina Chatzidaki
Maddison Sherwood has been using a wheelchair since the age of two and cannot breathe unaided. She needs 24-hour care due to her rare muscle and respiratory condition.
The 10-year-old from East Leake, UK has an extremely rare condition called spinal muscular atrophy with respiratory distress type 1 (SMARD1).
It is thought she is only one of between 40 to 60 known cases worldwide.
Her mother Lidia Sherwood told Barcroft TV: “When Maddison was diagnosed 10-years ago there were only around 10 to 15 cases in the whole world.
“It was a scary time because obviously there was nothing known about SMARD.
“There’s still not really much known now.”
Her condition means she weak muscles, poor swallowing abilities and cannot breathe without the aide of a ventilator.
Her tracheostomy tube is permanently attached to her with a portable ventilator, if it were to get even a small blockage she could potentially die.
Lidia said: “Being told my youngest has this life-threatening condition it was very scary.
“Doctors said she wouldn’t live past two years old if we didn’t ventilate her. There’s no way anyone with SMARD will live because their diaphragm is completely paralysed.”
Lidia and her husband Jamie made the important decision to become 24-hour full-time primary care givers for their daughter.
The young couple had to give up work and faced the challenge of raising their three other children, providing round the clock care for Maddison and learning new medical procedures.
Lidia said: “Because she needs two people 24 hours a day, she was only allowed out of hospital with both of us been full time carers.
“Jamie had to quit work. He was a full-time builder and has been since he was 15.
“It was a big step for him as a man to be that provider. But the sacrifice was Maddison was our priority.”
Her father Jamie added: “It has become normal life now, so for us we see it no different.
“It’s just part of day to day life, so we just get on with it.”
Despite her condition Maddison is pursuing her love of performing arts.
She regularly attends a local drama school where she sings, acts and dances - featuring in the cast of their productions.
Encouraged by her parents Maddison’s confidence on stage has grown in recent years with her drama teacher saying she was born to stand out.
Jo Gallagher, Principal at the school said: “When people ask me what sort of students we have here, I always mention Maddison.
“She’s a child who wasn’t supposed to live very long. So, to see her on stage singing, acting and dancing it’s outstanding.
“The teachers adore her; all the students think she’s a great friend and she gets along with everybody.”
Maddison has set up a YouTube channel to aims to remove the stigma of disabilities.
Her parents hope that by showing the world she is living the life of any 10-year-old girl they can raise awareness to children with similar conditions.
Their dream is to educate people to become more accepting of people with disabilities.