Matilda, nine, beats shielding to join Leeds Hospital Charity's fundraiser

The nine-year-old, who is paralysed from the chest down and has been cared for at Leeds Children's Hospitals since she was born in 2011, is among the fundraisers who have signed up to the charity’s summer challenge ‘Step For Your NHS’.

The fundraiser asks people to complete a set target of steps in recognition of the average 10,000 steps a nurse walks during a 12-hour shift.

Matilda came up with the idea to use her Fitbit to count the ‘steps’ as she propels herself along on her wheelchair and has set herself an impressive target of 20,000 - equivalent to nine miles - by her 10th birthday on September 1.

Proud mum Sharon said: “She always wanted to take part in something for the charity. We are in hospital all the time and got to know about Steps for the NHS and she said ‘I would like to do that in my chair - I could use my Fitbit’.”

Sharon was told in pregnancy that Matilda had spina bifida, where the spine does not develop properly in the womb, as well as hydrocephalus, a build-up of fluid in the brain.

At just one day old, surgeons operated on Matlida to close her spine and place a shunt into her brain and she was cared for on the neonatal unit for eight weeks before being allowed home to Ripponden near Halifax.

This was the first of many operations - over 50 so far, and mostly at Leeds Children’s Hospitals - as she suffers from many complex health conditions which have a huge impact on her day-to-day life, including intestinal failure for which she has been fed intravenously since she was two years old.

Matilda also has severe hypoglycaemia, causing her blood sugars to plummet, so needs to wear a backpack 24/7 to infuse life-saving fluids continuously.

She was due to have major life-changing surgery in the US before the Covid-19 pandemic hit and has been shielding along with her family, including four siblings, ever since in order to hopefully be able to go over when restrictions lift.

Sharon said: “We have now been shielding Matilda for 16 months because she is extremely clinically vulnerable, and she hasn’t been able to do the things she normally loves to.

“The staff at Leeds Children’s Hospital have been our saving grace – it’s the little things they do that help make a real difference to Matilda’s experience in hospital brighter, they’re like a second family to us”

Matlida’s fundraiser will also be in memory of her older sister, Daisy who died aged 19 in 2017.

Daisy had cerebral palsy and hydrocephalus - which Sharon said were completely unrelated to Matlida’s health condition.

She had also been cared for at Leeds Children’s Hospital her whole life and was well-loved by many of the same staff who now care for Matilda.

While still shielding, Matilda is making use of hospital corridors during her many medical visits, to help clock her up fundraising miles.

Sharon added: “We can’t take her out to busy parks to complete these steps so we’re having to do as much as we can on a quiet day at the park or on a field somewhere.

“It’s going to be ticking on all the time.”

To donate to Matilda’s fundraiser visit https://leedshospitalscharity.enthuse.com/pf/matilda-booth-91995For more information on Step For Your NHS,visit: www.leedshospitalscharity.org.uk/step