Gabby is 7 years old from Cornwall and needs selective dorsal rhizotomy surgery in the US because she deserves the chance of a better life.
Gabby is one of identical twins. Both Gabby and her twin sister Izzy have cerebral palsy after being born extremely premature at only 28 weeks and suffering severe brain haemorrhages.
After spending the whole of 2016 fundraising for Gabby’s sister, Izzy, to go to America, we never thought we would need to be back here doing the same again for Gabby. This is a long story but it will explain why we decided to do this for Gabby too and we really hope you can understand our predicament and hopefully support her the same way you supported Izzy.
Gabby is considered to have mild cerebral palsy. She can walk independently with the help of supportive shoes. At a quick glance, you probably wouldn’t notice her disability but when you look closely and compare her to a ‘typical’ 7-year-old, her disability becomes clearer. Even though her CP is classed as mild, Gabby is still a child who can only walk short distances before her legs start aching, she fatigues easily, she has extremely poor balance and falls a lot, especially in busy and fast environments, she can’t walk unaided on uneven surfaces, she can’t stand on one leg, she can’t go up or down a curb on her own, she can’t jump, she can’t skip, she can’t go up or down the stairs without holding onto a rail and being supervised by an adult. She can’t do many other things that a ‘typical’ 7-year-old can. One of the things she is always talking about it that she can’t RUN properly.
I initially started reading about Selective Dorsal Rhizotomy (SDR) – a life changing spinal operation that permanently reduces or eliminates the spasticity in the legs – as a treatment for Gabby’s sister, Izzy, who suffers from more severe cerebral palsy. But after extensively researching SDR and the benefits of it (I pretty much read all the research and medical studies available) and speaking to a number of adults who also suffer from Cerebral Palsy, and getting an insight of what it’s like to age with CP, it became very clear to me that no matter how mild Gabby’s cerebral palsy is, how mobile and independent she is now and how much physiotherapy input she gets throughout her life, the strain of a lifetime of spasticity on her muscles and joints will eventually catch up with her.
In 2016 we launched the fundraising campaign Help Izzy Walk to raise funds to take Gabby’s sister, Izzy, to St Louis in America to undergo SDR with Dr Park, the world’s leading SDR surgeon, with 30 years experience and 100% success rate. We were extremely lucky with the support we received from our community and managed to achieve our fundraising target in just 10 months. Izzy had SDR in St Louis in January 2017, the operation was a success and it was the best decision we have ever made for her.
Whilst in St Louis, we asked Dr Park to evaluate Gabby for SDR and after careful examination, he confirmed what I had already concluded from my research. He said that there was no doubt that SDR would benefit Gabby. He explained in more depth what a lifetime of spasticity does to the muscles and joints and how it causes premature ageing of the body. And based on his 30 years experience with following and treating CP patients, from early childhood to late adulthood, he said that Gabby’s mobility would start to decline in her 20’s and that she would start to suffer from a lot of pain in her joints and muscles and possibly require narcotics for pain relief and that between her 30’s and 40’s she would be using a wheelchair and that things would only get gradually worse as she got older. All because of the strain from a lifetime of spasticity. Pretty scary to hear that about your child’s future, isn’t it?
Dr Park went on to say that by Gabby having SDR and eliminating the spasticity, that strain would go away and that Gabby would go on to have a ‘typical’ life, she will be able to play sports, dance, skip, RUN and be just like her friends. And most importantly, she would not suffer from pain or premature body ageing as the strain from the spasticity would no longer be there.
So after hearing all this and after seeing first-hand how much SDR has helped Izzy, we decided put Gabby on Dr Park’s SDR waiting list at St Louis Children’s Hospital. We as parents, CANNOT deny Gabby of a much better future. Just like her sister, we think she deserves the chance of a better life too.
But unfortunately, we will need to fundraise again and honestly, we don’t know where we will find the strength, energy and courage to start all over again. We feel so blessed to have been so well supported by our community during Izzy’s campaign but we feel like we have exhausted every avenue and feel so embarrassed to have to ask the same people to support our family again. If there was a way to avoid this, we would, but unfortunately there isn’t.
Different to Izzy, Gabby will only require one surgery and we hope to be able to follow most of the physiotherapy programme at home, with the equipment already purchased for Izzy. So Gabby’s target is not as much as Izzy’s was.
Like before, we are fundraising with the registered charity Just4Children (no. 1164473) and they will securely keep all of Gabby’s funds and pay for all invoices and treatments directly.
If you would like to join us on our new fundraising challenge please get in touch with me via firstname.lastname@example.org or 07732 994436
Thank you for reading our story.