Spina Bifida Awareness Week 2021 - Marion's Story

Marion's Story...

"With support from my various Shine Support and Development Workers, and other Shine staff, I have achieved so much more than I would have thought possible!"

I was born with spina bifida occulta and then diagnosed with congenial hydrocephalus. At this point my parents were made aware of a charity called ASBAH, now known as Shine, this charity supports parents, children and adults and those who discover they have got spina bifida much later in life. 

The charity supported my parents through what was a very uncertain time and helped them understand what both conditions were and what to expect. Some of this information was on the negative side, which luckily for me they decided that they would take things one day at a time! 

I had an operation to close the gap in my back as soon as was possible. I think it was a few days later that I had shunt inserted into my skull to drain the build-up of fluid on my brain. 

My parents treated me the same as my older brother. With support from ASBAH now known as Shine, my parents were able to send me to mainstream primary school where I learned to stand up for myself when the children were being mean to me. It was around this time I was encouraged to go to riding for the disabled - again Shine was involved. For me this was when I realised that although I was born with disabilities which were challenging to me, they were insufficient compared to the other disabled children around me who needed much more support. The volunteers would challenge me by putting me on different ponies who were a bit unpredictable. I would fall off once or twice, mainly the pony deciding he had enough of me! 

I learned to ride a bike and yes, I gave my poor mother several hairy moments, but I would fall off a lot and then get back on again. 

I attended mainstream school, and was able to carry on riding till I was 16 years old. This was my choice to stop because I wanted to see what qualifications I could gain. 

I did a Youth Training Scheme when I left school and achieved several qualifications. 

I got a full-time job working for the London Ambulance Service Patient Transport as a control Assistant Grade 1, I was later promoted to Control Assistant Grade 2, then became a Patient Transport Co-Ordinator for nearly 18 years until I was forced to give up the job I loved in 2007, due to ill-health. 

I was working as a volunteer for a local hospice as a receptionist/admin assistant for 10 years, then the pandemic hit.  

Shine have helped me to focus on the now and not the past. 

With support from my various Shine Support and Development Workers, and other Shine staff, I have achieved so much more than I would have thought possible! I am back to the person I was before my health problems, the person who trusted herself to make decisions. 

All the staff at Shine that I have had advise and support from have helped me with the process of applying for benefits, advised me how to get help with occupational therapy when I needed certain equipment, and been at the end of the phone when I needed - reminding me that I am not alone.