IT wasn’t until she went to school that Elly realised people thought there was anything different about her big sister.

Yes, Fiona, who has Down’s Syndrome, needed more help with certain tasks but there wasn’t anything remarkable about that.

An occasion that sticks in Elly’s mind was when, aged around five, she had to sit with some older children at lunch.

“One kid said something like ‘her sister’s a spastic’,” remembers the 29-year-old from Southampton.

“They all started talking about her. I didn’t have anything to say in response.

“For the first time I was aware that there was something that people could criticise her for. I found that quite difficult to take. It made me wonder what other people were saying about her.

“I didn’t feel ashamed. It made me feel more protective.”

Elly says that her parents were very careful to make sure that they gave her and the girls’ older brother Daniel as much attention as Fiona but admits that there were times when she felt that things were unfair.

“As a child you always look for the injustice.

I always had this big thing at Christmas that she seemed to have loads of presents and that upset me, but looking back it was that I was asking for something expensive and she didn’t ask for anything, so my mum would buy her lots of small presents, because that would hold her attention better.

“Another time I remember was on my birthday. My family came into our room with my presents and she started opening them. I was really upset at the time but once I realised that she didn’t understand and it wasn’t her fault, it was fine.

“It’s just the sort of thing you can’t help reacting to as a child.”

Although there were isolated negative incidents, Elly says she never resented her sister as she was growing up and doesn’t feel that having a sister with Down’s Syndrome had a negative impact on her – in fact quite the opposite.

“I couldn’t imagine a life where Fiona didn’t have Down’s Syndrome,” she says.

“I feel it has made me a more sensitive person. She has absolutely enriched my life. I think it’s given me more empathy.

“I don’t think I would have the job I do now – working as a service coordinator with Southampton Mencap – if it wasn’t for her.”

Fiona having Down’s Syndrome has, of course, affected her and Elly’s relationship, but that doesn’t mean the sisters aren’t close.

“Even when you’re the younger sibling, when your sister needs help doing certain things, it does make you feel closer to someone when you’re helping them.”

She adds that when the girls hit their teens, she regretted that she couldn’t turn to her big sister for advice about teenage issues.

“I wished I could talk to her about relationships and things like that. I wished she’d had those experiences first,” she says.

“You talk to your friends who have older sisters and realise that quite often that relationship offers a lot to learn. It’s not that I didn’t learn things from Fiona, but just that it was different types of things.”

Fiona lives at the family home in Southampton and Elly generally sees her once a week. She says that over the years the sisters’ relationship has been fairly consistent.

“It’s not an intellectual relationship in any real way – it’s an emotional relationship,” she explains.

“If I haven’t been to my parents’ house for a few weeks she starts saying things like ‘Elly gone’. She can be very protective. If she sees me crying she will say things like ‘poor Elly’. She has nurturing instincts but it’s more difficult for her to get them across.”

Sadly, since they were children, Elly has been aware that her sister faces narrow-mindedness and prejudice – not only from fellow school children but also from adults.

“I remember when some Jehovah’s Witnesses came to our door. We were young and followed my mum. I’ll always remember one of them looked at her and said ‘do you feel that that’s some sort of punishment?’.

“I felt really confused about why they were saying that about Fiona and I remember my mum was very upset.

“That kind of thing can have quite a profound effect when you’re growing up.

“People say she ‘suffers’ from Down’s Syndrome but she isn’t suffering.

“She is the happiest person I know. She’s a really content young woman who feels very secure in her life, so of course she hadn’t been punished for something she did in a past life.

“She is completely without malice. She’s the most gentle, loving person you will ever meet.”