My name is Frankie and I am 10 years old. I have been a patient under Birmingham Children’s Hospital since the day I was born. I was born with a condition known as congenital hydrocephalus which means cerebrospinal fluid builds up in my brain due to a narrowing of the aqueduct between the ventricles of my brain. Due to the build up of fluid in my brain as it developed, I have a big part of my brain missing. I also have a rare genetic brain abnormality known as Rhombencephalosynapsis which means my cerebellar hemispheres are fused together. As a result of the conditions associated with my brain, I have had developmental delays and other medical conditions such 2D vision, a squint, audiology problems that eventually corrected themselves as I got bigger, a hypoplastic thumb and VSD and PDA which are defects in the heart that fortunately corrected themselves.

Since I was born, I’ve had numerous surgeries on my brain and eyes at Birmingham Children’s Hospital, the first one being when I was just 11 weeks old where they fitted a VP shunt to my brain which works on a pressure valve to release excess CSF to my abdomen and the most recent was in November 2022 when my first shunt malfunctioned causing me to be very poorly and had to be replaced in an emergency surgery. I am currently on the waiting list for another surgery at Birmingham Children’s Hospital to correct the squint I have again, that was affected by stretched muscle from the build up of fluid in my brain when my shunt malfunctioned. The last time I had this surgery was in June 2019 and my first surgery associated with it was in March 2016 just before I turned 1.

My parents were told before I was born that it was likely I would not be able to move my body by myself and once I was born it would be a case of waiting and seeing what happened as all of the medical conditions I had were not always associated with each other. My developmental delays meant I was never able to crawl properly so I just moved around the floor on my back using my legs to push. I could not sit up until I was 2.5 years old and I learnt how to stand up holding onto something shortly afterwards. I first walked on my own at 3.5 years old although needed support due to my balance issues. I used some specialist equipment which included a standing frame for activities and a walker for support when walking outside. I got my first wheelchair in 2019 which I used any time I would need to walk any sort of distance. I used my wheelchair everyday to get to school but about 2 years ago I managed to build up enough strength to only need it for walking one way to school and I was able to walk back independently about 3 days of the week. Within the last year- 18 months I have built up enough strength to able to walk to school and back most days without the use of my chair, however, I still need it for long distance walking and during times when I am fatigued as when I walk independently my balance issues and 2D vision still cause me to have falls and to not be able to walk in a straight line unaided so the fatigue makes the risks associated with these much higher for me.

Now that I am gaining more independence, I would like to give back to Birmingham Children’s Hospital for the ongoing, amazing care and support I have received from them since the day I was born, so I am taking part in a kids summer challenge to raise money for them. I will be completing a mile every day in August which will be done through walking, cycling or swimming and may include using my wheelchair if it is needed. For those that have known me a long time, you will know what a challenge this could be for me and you will know what an achievement this will be for me, given what the future looked like for me in my original diagnosis so I really hope you can support me in this challenge if you are in a position to do so.

Thank you everyone for reading and in advance for anyone who does donate. We will keep you updated with how I am getting on throughout August.

Lots of love,

Frankie ❤️