Registered Charity 1183086
This week I have had the privilege to communicate with Vicky and to ask her all about why she has taken on the challenge of the London Landmark Half Marathon on Sunday, in aid of Harry’s HAT. Vicky who communicates via British Sign Language has written her answers in her own words.
Vicky is a Mum to two beautiful children. She is a hydro-warrior, who is very aware of the need to improve awareness around hydrocephalus and understanding of the condition. Vicky also has bilateral hearing loss, and would love to see people understand the deaf community better, especially when they are faced with the challenges of navigating medical emergencies. I would like to thank Vicky for taking the time to answer my questions, and for being an absolute legend for taken on this half marathon!
To support Vicky please donate here: https://www.justgiving.com/fundraising/vickyllhm
Can you tell us a little about your diagnosis and your experience of living with hydrocephalus?
My parents told me that initially after birth I was able to feed but quite quickly, they could see I was uncomfortable, and I was very sick. My parents were worried. The GP started to be curious as my head size started to grow too big. The GP decided to send me straight to the Children’s Hospital and they found out, by MRI scan, that my diagnosis was fluid and a bleed in my brain as well. The Hospital decided to keep me in until my skull was strong enough to manage a shunt. I stayed in the hospital until I was about nine weeks old then I had my first shunt which was on the right side. This worked well but then a few years later my right sided shunt stopped working. The doctors put a new one on my left side so now I still use the left side and not the right.
What other resources would you like to see for people like yourself who live with hydrocephalus?
Things for people who have hydrocephalus and are also deaf.
What has inspired you to take on this challenge of running the London Landmarks half marathon?
I support the charity and want to raise awareness in all hospitals of hydrocephalus. l would also like to include raising awareness for people who are Deaf as well. I need BSL interpreters, and this isn’t always recognized and achieved on time for me when I go to hospital. The last time I went to hospital with problems with my shunt they were not able to get an interpreter for me and I was scared, felt isolated and this needs to change. I want to make all Doctors to be aware that I need the extra time and not to delay me for a long time.
As for the Marathon I want to challenge myself to do it- I don’t let anything stop me.
Why is it important for more people to know about hydrocephalus?
It is very important that people with hydrocephalus are seen quickly, and we can’t be left too long. I’d also like to make sure people are aware of the things which can be symptoms of hydrocephalus like head size, and even hearing tests Hydrocephalus is what caused me to become deaf which isn’t aided with hearing aids and cochlear implants.
