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First Step stories: Romford family cherishes specialist support they have received for son with epilepsy

PUBLISHED: 15:00 16 November 2018 | UPDATED: 15:06 16 November 2018

Carter with his brothers Finley and Ollie. Photo: Carter family

Carter with his brothers Finley and Ollie. Photo: Carter family

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The mother of a three-year-old with a rare genetic condition described a Hornchurch charity that supports youngsters with disabilities and special needs as “their shoulder to cry on”.

L-R: Mark, Carter, Ollie, Finley and mum Emma at a First Step Christmas event. Photo: Carter familyL-R: Mark, Carter, Ollie, Finley and mum Emma at a First Step Christmas event. Photo: Carter family

For the Recorder’s third feature on families’ experiences with First Step in Tangmere Crescent, we spoke with the Crampton family whose son Carter, has been attending sessions and events at the charity for more than three years.

Emma Crampton, 32, from Camborne Avenue in Romford found out about First Step through a support worker who was helping the family after her son began having seizures two days after his birth.

“Carter was in and out of Queen’s Hospital and the Great Ormond Street Hospital for the first two years of his life,” said Emma.

“We had lots of support from the hospital, but we needed to be able to go out and socialise with other people.

“With Carter it can sometimes be quite awkward going to regular children groups.”

Carter has a condition known as KCNQ2. It’s a rare condition linked to epilepsy and children who have the condition often have some degree of developmental impairment after their diagnosis.

Baby Carter. Photo: Carter familyBaby Carter. Photo: Carter family

Emma told the Recorder: “Carter used to go to a family session at First Step. I was able to also take his brother along to play with him which was really nice.

“It was also good to meet other families and children that are in a similar situation to us.

“In the holidays they provide activities for children and siblings to take part in activities like biscuit making and arts and crafts.

“First Step used to offer massages and counselling sessions. There is no other place in the borough like them and they’re always really helpful if we need advice.”

Since discovering First Step, Carter has enjoyed spending time in their special sensory room and their preschool activities which have been preparing him to start school next year in September.

Speaking about starting school, Emma said: “I’m quite worried, because we’ve always had First Step’s support.

Carter with Father Christmas at a First Step event. Photo: Carter familyCarter with Father Christmas at a First Step event. Photo: Carter family

“They’ve been so wonderful that we go to a new school, we’re definitely going to miss them.”

The mother-of-three added: “I feel like as they have got to know Carter so well, they know what his strengths are and are able to anticipate his needs.

“When we pull up in the car park, Carter always recognises that we’re at First Step and he starts smiling.

“They are just so understanding and they really are a shoulder to cry on. They will help you in anyway they can.

“He knows all of the ladies there, especially Debbie Bennett.”

Emma noted that more needs to be done in Havering in terms of accessibility for families and children with special needs and disabilities.

She said: “I have major issues when I’m taking Carter out for the day. Some places still don’t have disabled toilets big enough for me and him to use.

“Whereas everything at First Step is so well thought-out to meet our needs.

“Before we went [to the charity] I was quite apprehensive, but when we arrived it was such a happy place to be. The other parents were all in the same position as us and I’ve got a really good friendship group from there.

“I don’t know what we would have done without First Step.”

First Step is now celebrating 30 years of supporting youngsters with disabilities and special needs this year.

It now works with more than 100 pre-school children, and their families, offering education services, support, information and encouragement.

First Step’s mission is to provide the best possible environment to support families and enable their very young children with special needs and/or disabilities to maximise their individual potential. The charity is celebrating its 30th birthday this year and to celebrate, held an anniversary ball at Orsett Hall, Grays, where more than £30,000 was raised for the cause.

The Recorder also showed our support in 2015 with our year-long Fundraise On The First campaign where more than £25,000 was raised.

For more information, visit www.firststep.org.uk

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