Four-year-old Matilda Booth’s battle for life began even before birth – but the tenacious, funny and bright little girl has proved time and time again that she’s a fighter.
Matilda and her twin Layla were born six weeks early in September 2011, after her parents Sharon and Andrew defied doctors’ advice to terminate the pregnancy, something the family-orientated couple from Sowerby Bridge “simply could not contemplate”.
At just 12 hours old and weighing only four pounds she underwent the first of more than 30 operations she has had so far.
The complex procedure was to close an opening in her spine caused by spina bifida and to place a drainage shunt in her brain to counteract hydrocephalus – water on the brain – that is still needed today.
She is paralysed from the chest down and relies on her power chair – Wizzy bug – to get her around and to play with her siblings, twin Layla, Zachary, 15 months, Oliver, five, Darcie, 13, twins Daisy and Jake, 18, and Adam, 25.
Matilda has spent half her life in hospital and understands her condition – but her family says she does she let it get in her way.
And it is for her bravery and the joy she brings to their lives that her family have nominated this remarkable little girl in the Yorkshire Children of Courage Awards.
The awards, which take place in Leeds next month, recognise the most courageous youngsters in the region while raising money for good causes.
Mrs Booth, 44, said: “Despite all the painful procedures she goes through, constant hospital admissions, daily physio as well as being in pain and having to rely on an adult for everything– even a change of position – she is the happiest little girl I know, always smiling and laughing.”
Matilda also has a rare stomach condition called gastric antral vascular ectasia or watermelon stomach – which is almost unheard of in children, and causes bleeding that requires emergency blood transfusions.
That combined with intestinal failure means she cannot eat or drink, and is fed via several IV lines and a Hickman line in her heart that are connected 24 hours a day.
Mrs Booth, who gave up her job as a paediatric nurse to look after Matilda full-time, said: “What amazes me about her is she sees herself as any other little girl, she will happily tell people her legs don’t work and loves to explain to people what all her tubes are for and how they work.
“She is proud of her tubes and scars and is more than happy to show everyone how special she is.”
Last Christmas marked a significant milestone for the family – Matilda’s first at home, after she left hospital after an eight-month stay.
“Usually we have our family Christmases on the ward so it was a very special time for us to be home,” Mrs Booth said.
“She has been in and out of hospital since, but every moment we have at home is so precious. It’s where we all want to be – together.”
The family receive “amazing” care and support from staff at Leeds General Infirmary, and from Martin House Children’s Hospice and the Forget Me Not Hospice, which both provide respite stays.
They also receive support from the charity Swan UK (Syndromes Without A Name), as genetic testing has still not given them any explanation for Matilda’s health problems.
“Matilda is our beautiful swan,” Mrs Booth said.
“Her future is very uncertain and she has so many potential life-threatening conditions that we feel we are living with a time bomb some days.
“Despite all this Matilda never stops smiling and uses the abilities she has to her advantage.”
Tickets for the Children of Courage Awards are still available with a table for 10 people costing £700 or individual tickets priced at £75.
More information about the event and the work of the St James’s Place Foundation is available at www.yorkshirechildren.co.uk.