Sarah Bennett-Evans is best known for campaigning for Williams syndrome, as her four-year-old son Harrison Evans has the condition. Alice Rose found out more about the woman behind the fundraising.

 “I SAW a picture of someone who looked exactly like my son, except it wasn’t him. He looked identical to my child. 

I just couldn’t understand why there was someone on my computer screen who was the spitting image of my little boy, when he wasn’t related to him at all. 

I was devastated. How was there a child that looked like my baby who was not related? I was thinking how unreal this was, and this particular child was in America so I actually contacted the parents. 

We then approached our neonatologist and suggested that Harri have some blood tests. It took us three months to convince him we needed these blood tests. 

In the end we had them and after we had those blood tests we actually moved here - from Abergavenny to Newbridge. 

We got a call from the neonatologist – it was a week before Harri’s first birthday – asking us to attend the Royal Gwent to talk about the results. 

I said ‘well can you tell us now, we would rather know over the phone instead of travelling there in a panic’. 

And he told us it was then it was confirmed that Harri had Williams Syndrome. 

That was the massive reason for all of these symptoms – the bowel popping out, the heart murmur and other things.

It still affects me, I don’t think I will ever get over being told I have a child with something life-changing.

We go about our lives day to day, and with Harri being our first born it was normal to us. 

We now have our little boy Fin, and we carry on.

On a day-to-day basis I do a lot of work for Williams syndrome, but sometimes I do have little moments when it upsets me still. 

Like when I see him walking in to school and seeing him walk differently to the other children. 

Last year or the start of this year we were told Harri has developed aortic stenosis. That tends to be the one that causes a problem for people with Williams syndrome. 

If that worsens, he has to have an operation on his heart. 

However, we do just operate as a normal family. We know a bit differently now as we had Fin on Boxing Day last year and we have seen the difference in the boys.

We just function though; we have great support round us. 

I became the regional contact for Williams syndrome in South Wales two years ago maybe.

It started off when we did an event in Bambinos in Caerphilly.

I didn’t know anyone from the area and I wanted to make friends with people and get Harri to interact more with other children.

I met some absolutely fantastic people there who I am still friends with today, and I met a woman called Rachel who has Behcet’s (disease). 

She’s a great person and convinced me to hold an event and it went from there. 

We did Hands Up For Harri and it was a beautiful day – we had T-shirts printed for the families and it was lovely.

That was our first fundraiser and the year after we did one at home here in Newbridge. It was for people in the local community to get to know me and Harri more as my partner Scott grew up here with his family.

We put up a marquee on the patio and did a cafe for the day. Harri and I went round and delivered leaflets to all of the street to come round for the day. 

It was so nice, the community here is amazing. It was a big hit. 
I have held so many events and we have plans for next year as well. 

I have so many ideas in the pipeline. That’s my problem – too many ideas! 
Aside from me organising events to support the Williams Syndrome charity I look after both Harri and Fin and I do craft work on the side.

I don’t get time to make things a lot but I do things like glitter glasses and I’ve made ribbons for William Syndrome for people to buy which are really sweet. 

It is my one relax and if I didn’t have this I think I would go mental.

I don’t make loads of money but I do it for the love of it really. 

I have a craft fair coming up soon so I’ll be selling some bits and bobs for that and I’ll hopefully make a bit more for Williams syndrome too. 

I make little fabric hearts as well which I give to the foundation.

We as a family enjoy spending time at home as we have two dogs, a cat two goats and a load of chickens. And three fish tanks as well. 

We have a lot of land behind our house and the kids love it, too.

It’s hard work and the house is always on the go. 

I get up with the kids at 6am and then after crafting I don’t get to bed until after midnight or after, then I’m up with the kids through the night. 

Thinking about it, I probably function on about five hours sleep which I don’t know how I manage it. 

Me and Scott love living here. Scott has two businesses as well: he runs a massive furniture store in Aberdare and it has just received an award for the best furniture store in Rhondda Canon Taf along with two major stores. 

Scott’s was the only independent to win. He’s doing amazingly. It’s beautiful and he is really working hard. 

He has a carpet shop in Cardiff as well and we are also still doing our house up, too. We are very busy. 

We don’t know how we get time to actually be a family or couple with all that we do, but we have found time to get married next year on March 3, which is my dad’s 85th birthday. 

That will be in the church I grew up in, the church in Govilon.
We still go to church, we go back every month to Govilon to our local one. My dad was a verger there and I was confirmed there. 

People at the church are always wanting to do stuff for Williams syndrome and they pray for Harri as well because of his heart condition. 

Since having Harri and because I have Harri I have made such amazing contacts and friends, through church, through school, through the local community, newspapers – through all sorts, really. 

I think throughout my whole life, I have felt this is the best part of my life. 

Having two children and a partner I am getting married to and meeting all these amazing people... I don’t work because I look after the children but I volunteer and work hard at being a good mum and do my craft business.

My children are my absolute life and they come before anything. 

I never thought I would have children and was told at one point I couldn’t have them because of hormonal issues and polycystic ovaries.

When I was younger I never thought I would be in the position now. I never even thought I would get married. 

I have always been extremely independent and still am really.

But to have a great home and lovely family, friends and be in a great community, I couldn’t wish for any more, really.”