Helen set out to run the 2020 Virgin Money Giving London Marathon to raise funds for SAUK but when that was cancelled, she took up the opportunity to run the Virtual version instead. Helen ended up raising an incredible £1560.50 which goes a long way in supporting what we do. We spoke to Helen about why raising funds for SAUK was a personal choice for her and her family.
Ben, who turns 13 in March, was diagnosed with scoliosis as a baby. We were given the watch and wait advice by his surgeon, but by the time he was 18 months old it was very clear that it was progressing quite rapidly. At 2 years old he was fitted with his first body cast. He had only just learnt to walk and we were concerned how it would affect his physical mobility. However, within 24 hours he was back on his feet! These casts were replaced every 3 months under a general anaesthetic. At 3 and a half he moved to having a removable brace. This was worn at all times apart from when he had a bath or went swimming. He was amazing throughout all of it the and never complained, even when he had chicken pox!!
At 5 years old Ben had his first set of growing rods fitted. This was obviously a very worrying experience, but again he dealt with it brilliantly. Initially these were extended every 6 months with another operation. When he was 7 his surgeon decided to swap the rods to the MAGEC growing rods, which was fantastic as it meant the lengthening could take place in out-patients rather than with another operation. In November 2020 he had his 3rd set of MAGEC rods inserted. This will hopefully be the last operation before the final spinal fusion operation. In total he has had 7 (or possibly 8 – we seem to have lost count) back operations. Every time he has bounced back with remarkable speed. People who know him are astonished with what he does so soon after big surgery. Ben is very active and loves football, he plays for a PAN disability team, as well as running and bike riding. He will give anything a go. We have approached his scoliosis with the attitude that is shouldn’t stop him from doing anything. Although, there are obviously a few things that he has to avoid such as gymnastics and rugby.
We were given a SAUK leaflet by Ben’s surgeon when we were first told that he would need to be in a plaster body cast. He told us that the charity was invaluable for advice and support, which we found to be absolutely true. We were put in contact with another family who had a child the same age as Ben and at that point had been through the same treatment, so we were able to share experiences and normalise things. SAUK were also able to reassure us that the surgeon Ben was seeing was excellent at what he does, which was important knowing that we were in this for the long haul.
I am a keen runner and doing the London Marathon is something I always had in the back of my mind as a challenge I wanted to do. I put in for the ballot in April 2019 (not thinking for a minute that I would get a place, but at least I could say that I had tried!) and I was one of the fortunate ones to get a place for the 2020 marathon. As soon as I had a place, I knew that raising funds for a charity that we have benefitted from personally was something that I wanted to do. The training was going well so it was a real disappointment when it was cancelled in March 2020. I managed to keep my running ticking over but lost motivation with the long distances. I was not hugely keen to do the virtual marathon at first, but the thing that persuaded me was that I wanted the funds I had raised to go to the charity sooner rather later as it was clear that charities would be struggling throughout the pandemic.
I had so much support from friends and family. The 1st 16 miles I ran with my training buddy Emma and another friend supported us on her bike as the weather was appalling. For the middle 6 miles there was a group of 6 of us running past many friends’ houses in the small town where I live. Having friends come out in the pouring rain to cheer and wave banners was a real boost. The final section we ran around the local park and Ben joined me for this. It wasn’t the London Marathon I had in mind but it was a fantastic experience, particularly as I knew that I was raising money for such a lovely charity. The generosity from those that sponsored me was quite over whelming at times, and it really did help me to get through the miles. Our friends and family know the journey that we have been on with Ben and scoliosis has not always been easy and it means so much that they have supported me in raising such a fantastic amount of money.
I still have the real London Marathon ahead of me this year and amazingly my husband has got a place in this year’s ballot so we will both be able to run.