Nine-year-old Matilda Booth has been cared for at Leeds Children’s Hospital since she was born on the 1^st September 2011.

This Summer, she decided that she wanted to give something back to the amazing staff who look after her. Despite being paralysed from the chest down, Matilda was determined to join in our Step For Your NHS challenge, and reach her step target in her wheelchair.

Matilda also wanted to do the challenge in memory of her big sister Daisy, who sadly passed away at just 19-years-old in August 2017. Daisy had also been cared for at Leeds Children’s Hospital her whole life and was well-loved by many of the staff who care for Matilda too.  

Matilda’s mum Sharon said, “When we saw the Facebook post about Step For Your NHS immediately Matilda asked if she could do it.....but then realised she couldn’t do “steps” as she cannot walk. I told her anything is possible and of course she could still take part by doing her steps in her wheelchair and clock them up on her fit bit!”

In pregnancy, Sharon was told that Matilda had Spina Bifida, meaning her spine had not developed properly in the womb and hydrocephalus, a build up of fluid in the brain.

At just one day old, Matilda had a life-changing operation to close her spine and place a shunt into her brain and was cared for on the neonatal unit for eight weeks until she could finally return home with her family.

Since then, Matilda has had over 50 operations in her short life, the majority performed at Leeds Children’s Hospital, around 25 miles away from the family’s home in Ripponden, Halifax.

Matilda suffers from lots of complex health conditions which have a huge impact on her day-to-day life. She has intestinal failure and has been fed intravenously since she was two years old, receiving all her nutrition, medications and fluids via a central line placed just above her heart.

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.

Sharon says that things have been tougher than ever for Matilda during the coronavirus pandemic:

“Matilda was due to have major, life changing spinal surgery in the US last year, but due to Covid it was postponed. 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!”

Thanks to her fantastic fundraising efforts so far, Matilda has almost reached her £500 target. Matilda is hoping to complete 20,000 steps – a total of 9 miles by the 1st of September, when she celebrates her 10th birthday!

 

Donate to Matilda’s fundraising page here.

 

If you’d like to join Matilda and Step For Your NHS, you can sign up below

Step for your NHS