Louise Mouncey - Chair
I have three children, Jessica, Benjamin and Oliver. Benjamin has Down's Syndrome. We did not have any screening during pregnancy and therefore his diagnosis was a huge shock to us. Unfortunately we had a very outdated understanding of the condition and therefore we worried about Benjamin’s future. We are now four years into the rollercoaster journey and I know that I did not need to worry as much as I did. He has had a few health hiccups along the way however he is a very determined young boy who achieves any targets given to him. He started mainstream primary school in September 2020 and he loves attending and has made some lovely friendships. I
When Benjamin was born I felt I was thrown onto a rollercoaster and I did not know where to go for support and advice. I was not confident in reaching out to people I did not know. This was my drive into setting up Shine21. Being at the end of the phone for when a parent is ready to reach out and need some support or someone to talk to who is on a similar rollercoaster.
Helen Kel - Vice Chair
Hi, I’m mum to two children, Scarlett (5) and Reuben (2). I knew in pregnancy that there was a 1 in 14 chance that Reuben would be born with Down Syndrome and declined further testing. His diagnosis was confirmed postnatally. Unfortunately the way some medical professionals handled my decision to continue my pregnancy without further testing prenatally and then the way the diagnosis was dealt with postnatally was not good. It was handled in a negative way by some, though I hasten to add not all medical professionals involved, and this negativity managed to steal some of my joy about my new addition. When Reuben was less than 24 hours old I remember having to justify my decision to a midwife and the reason that Reuben had made it into the world, as she seemed mystified that I had known there was a 1 in 14 chance and yet here he was. We had to stay in the hospital for 6 days after he was born due to Reuben needing light therapy for jaundice. During this time I felt very isolated and alone after the diagnosis and it was only when I found support from the online ds community that these feelings were shattered and I found the groups to be a real lifeline for me. I want to ensure that no parent goes through what I went through and that a woman’s choice to continue her pregnancy is always respected and accepted. I want to ensure that every parent has access to an active, nurturing and supportive support group which is a safe space for them and where they will always get up to date advice to support their child’s development. I want to ensure every child who has ds in this area has the best possible start in life. I feel passionately that parents shouldn’t have to foot the bill to achieve this aim. These are the reasons why I wanted Shine21 to be set up and the reasons why I am always prepared to find time and listen and support another parent. If you ever need a chat or have any questions don’t hesitate to give me a shout.