My Story

I'm raising money for Leeds Teaching hospital because.... of the outstanding care it has provided both my daughters with, over the last 2 decades.

Matilda  was born at Leeds General infirmary in 2011, we knew in pregnancy she had Spina Bifida and hydrocephalus and would need major brain and spine surgery at birth.
At just one day old she had an operation to closed her spine and place a shunt into her brain, Matilda remained on the neonatal unit for 8 weeks before we finally took her home.
Over the years it became apparent that there was more to Matilda’s disability than just her Spina Bifida. Matilda is a full time wheelchair user and also suffers from many very complex health conditions that impact on her day to day life.

Matilda has intestinal failure, she cannot eat or drink at all and does not absorb anything in her gut, She has therefore been fed intravenously for the last 7 years and receives all her nutrition, medications and fluids via a central line placed just above her heart.
Matilda also has severe hypoglycaemia and drops her blood sugars to dangerously low levels after a few minutes if her infusions stop, therefore she is attached to a backpack 24/7 to infuse these life saving fluids continuously.
Matilda is on her 17th central line, which have all had to be replaced due to blockage of having many so things running through them constantly.
Matilda has clocked up more than 50 operations in her short life, the majority being performed at Leeds Children’s Hospital.

Over the years Matilda has been a regular patient on various speciality wards such as Neurosurgery, haematology, children’s medical, paediatric surgery, CAT unit and the children’s day case unit.

Matilda was due to have major, life changing spinal surgery in the US last year, but due to Covid it was postponed. We have been shielding Matilda for 16 months now because she is clinically extremely vulnerable and it’s been a tough year for her not being able to do the things we usually do.
We haven’t even been able to go to stay at Martin House Children’s Hospice due to the pandemic and this is one thing Matilda really misses.

Matilda fully recognises and appreciates the immense care and support she receives from everyone who plays a part in her care, as we all do and she wanted to do something to try and raise some money for Leeds Children’s Hospital.
When we saw the Facebook post about Steps for our 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!

Matilda would also like to do the steps in memory of her big sister Daisy who sadly passed away in ICU at St James hospital, Leeds in August 2017 after being cared for there for 5 months by the fabulous doctors and nurses.
Daisy was also a very regular patient at Leeds general infirmary over the 19 years of her life and was loved by many there who cared for her.

Therefore, we have decided to attempt to complete 20,000 steps (9 miles) of “steps” in 2 months and she will complete her last mile on her 10th Birthday on 1st September.

Matilda is very excited about doing this and raising some money for Leeds Children’s Hospital to say her thank you to every single person who has played a part in Matilda and Daisy’s care over the last 2 decades.

Matilda would be very grateful for any support of donations and sharing of her fundraising page, let’s try and raise as much as we can for this amazing hospital who deserve every penny.

Thank you for your support.

Love Sharon and Matilda Booth xx