Sarah's story

My name is Sarah and I’m 17 years old. My life hasn’t been easy, but it is my resilience, determination and the marvellous people in it that have got me to where I am today. Despite having several lifelong disabilities, I have never let anything hold me back.

I was born in August 2004, with congenital hydrocephalus, Cerebral Palsy (a left sided Hemiplegia), a cerebral visual impairment, with field loss on the left in both eyes. In March 2021, I was diagnosed with epilepsy and, about six weeks later, my eyesight suddenly rapidly deteriorated, leading to an intolerance to my glasses.

As well as my operations, I’ve had multiple inpatient and overnight hospital stays. I was in hospital for 2 months during one hospital stay, when I was a couple of months old. 

I have had 11 operations so far: 8 on my brain, 2 on my legs and 1 on my eyes. Although most of these were when I was much younger and I can’t remember them, many of these led to overnight stays.

When I was little, I had to wear an eye patch over my left eye, a splint on my left leg and a Lycra garment on my left arm. As a toddler, I had to spend a lot of time in a standing frame. I’m so glad I don’t have this anymore! Although I don’t have to wear the Lycra garment or the eye patch anymore, I will have to wear a splint for the rest of my life.

Having multiple complex disabilities has made life harder for me than the average person. It doesn’t stop me from doing the same things as everyone else, but I just do them differently.

As a young person going into hospital, there are many challenges.

Transition from paediatric to adult care

This has been my most difficult year. Before, if had spent the night in the paediatric ward, I was allowed to have my mum or dad stay with me. Earlier this year, when I had just turned 17, I was in an adult ward with people at least three times my age. Whilst this was hard, the worst part was being told that a parent couldn’t stay with me on the ward. This caused me a huge amount of distress and I remember feeling very uncertain until I was told my mum would be able to stay in a side room. I felt much more reassured after that.

I’ve had hundreds of hospital appointments throughout my life and, as I’ve grown older, you’d think that these would have become more bearable. If anything, they’ve become harder, because the number of hospital appointments have increased, sometimes in paediatrics and sometimes under adult services. I know this isn’t the end and I’ve got a lot of these ahead of me.

Missing school

Being diagnosed with epilepsy and significant eyesight loss earlier this year has meant additional appointments, which have had a significant impact, particularly because I’ve had to miss a lot of school and education.

Navigating the hospital

Parking on levels other than the ground floor at Addenbrooke's has been particularly challenging, especially since my eyesight deteriorated. As I’m not a huge fan of lifts, this has meant using the stairs, which has been exceptionally difficult. I’ve struggled to see where the next step actually is, even with my mum pointing them out to me. It's been the same problem if my appointment is not on the ground floor.

Whilst the corridors are wide, it is difficult to navigate my way around the hospitals, because I struggle to see the signs for where I need to go, despite having my mum with me. If the signs were a bigger size, this would allow me to be more independent, especially as I’m going to be 18 next year.