Published: 00:01, 24 February 2017
“Occasionally I wanted to kill myself.
“It was very hard for me to live with that everyday.
“Every morning I didn’t want to get up and go to school. I knew kids would bully me because I’m different.”
VIDEO: Rachel Jackson, 14, talks about living with the disorder
Those are the words of 14-year-old Rachel Jackson, who suffers with foetal alcohol spectrum disorder (FASD).
She says more needs to be done to stop women drinking during pregnancy, pointing to the effect that it has had on her life.
Rachel’s an avid supporter of her adopted mum Sharon’s new charity – which she set up with co-founder Tracy Allen.
The charity – FASD Awareness Kent and Medway – offers education, awareness and specialised training to women during pregnancy and those affected by the disorder.
Sharon and Tracy care for children and adults with FASD, and are keen to share their knowledge and experiences to help others facing the challenges.
Sharon, 47, has adopted five children, including Rachel – who has been diagnosed with a long list of disabilities including autism, ADHD and sensory and anxiety issues.
These were caused by damage to her brain caused by her birth mother drinking while she was pregnant.
Sharon said: “In Medway about 2,700 children are being born with FASD.
“What we want to try and do – as this is 100% preventable – is to try and bring them figures down.
“There will always be some people who don’t realise they are pregnant so we’re not going to get rid of this completely.
“But there’s no reason why we can’t get this down to double figures.
“The main purpose of the charity is to give the people of Kent and Medway support.
“When I went out there to find more information all I found was a blank wall, and I know that my children have suffered because there wasn’t the help or understanding of FASD out there.”
The disorder can be diagnosed at birth because in some cases facial features can be distinct enough to show.
However, many diagnoses don’t take place till around the ages of six to eight.
Therefore, there’s no exact records of how many people have FASD and it can even go undiagnosed.
A rough estimation is around one in every 100 children are being born with it.
A study in America found the life expectancy of someone with FASD who doesn’t receive support is 34.
Rachel has struggled to find a place at a school in Medway which would fit her needs.
Sharon decided to take her out of her previous school because of the effect it had on her mental health.
Rachel’s been without provision for around a year and that will continue until a suitable school is found for her to study.
"It feels like I'm locked out of the rest of the world" - Rachel Jackson
“It made me feel rejected. Everyday I had a meltdown.
“The only person who could ever calm me down was my best friend but she’s moved to Australia. When she left it just got twice as worse.
“When you’re writing down maths or English you’ve always got to try and think and it takes you twice as long.
“Every time I went out on to the playground I could be free and do what I liked.
“I could run around and be a normal everyday kid and play with them. When I got back into the classroom it went back to the way it was.
“But I always have to have someone with me because I’m scared that someone might hurt me.
“It’s really difficult to go on public transport because you don’t know sometimes where you’re going or what time you have to catch the bus or the train.”
The Medway-based charity offers monthly support groups at The Old Church in Rainham High Street.
The next session is on Tuesday March 7. For more information about the charity, click here.
More by this authorJosie Hannett