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First Step stories: Hornchurch charity was parents ‘saviour’ after daughter suffered brain damage as a baby

PUBLISHED: 12:00 08 November 2018

Rob and Jenny Hooper with their daughter Phoebe. Photo: Ken Mears

Rob and Jenny Hooper with their daughter Phoebe. Photo: Ken Mears

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The Hooper family don’t know what they would have done if it wasn’t for a charity that supports youngsters with disabilities and special needs.

Rob and Jenny Hooper with their daughter Phoebe, who attended First Step for four years. Photo: Ken MearsRob and Jenny Hooper with their daughter Phoebe, who attended First Step for four years. Photo: Ken Mears

For the Recorder’s second feature on families’ experiences with First Step in Tangmere Crescent, Hornchurch, we spoke with Rob and Jenny Hooper, who live in Hyland Way.

The couple’s daughter, Phoebe was born at Queen’s Hospital in Rom Valley Way in 2007.

Rob said: “On our first night with Phoebe she had a seizure. We took her to hospital and then found out that she had very low blood sugar level and something called hyperinsulinism.

“Phoebe was transferred to Great Ormond Street Hospital where she had an operation that involves putting a central line directly into her blood stream.

“It’s a minor operation, but during it she had a heart attack and suffered brain damage.”

The Hooper family was referred to First Step by a home care worker from Queen’s.

L-R: Heather, Phoebe and Josie. Phoebe enjoyed attending musical therapy sessions at First Step until she was four-years-old. Photo: Rob HooperL-R: Heather, Phoebe and Josie. Phoebe enjoyed attending musical therapy sessions at First Step until she was four-years-old. Photo: Rob Hooper

“I’m not sure how we as a family would have survived those early days without First Steps providing a space where our situation wasn’t so unusual,” said Rob.

“We were able to meet with families going through similar situations – some of whom we have made lifelong friendships with - it made us feel nearly normal again.”

Phoebe started going to musical therapy classes and counselling sessions when she was five months old.

Jenny told the Recorder: “The musical therapy was very beneficial. It was just amazing to watch her communicate by copying the music.

“We also went to family sessions where she went to a play session by herself and then I went into the parents’ room. Phoebe is quite clingy, but she was able to get used to being away from me for a while.

“It gave me the opportunity to talk to other people that understood what I was going through.

Dad Rob Hooper, with Phoebe, one-week-old at Great Ormond Street Hospital. Photo: Hooper familyDad Rob Hooper, with Phoebe, one-week-old at Great Ormond Street Hospital. Photo: Hooper family

“I’ve made some really good friends at First Step.”

Years later and Rob and Jenny still visit First Step with Phoebe as they continue to support the charity with their various fundraising activities, such as the Christmas bazaar and annual bandeoke.

Rob added: “I’m now registering to be a volunteer because we owe them so much.

“For many people First Step is about the children, for us it was really about the whole family. They have ended up being a saviour for us.”

As a volunteer, Rob aims to help First Step raise enough funding to protect their future so they can keep providing their special needs day care service and to help raise their level of income so they provide more enhanced services.

Speaking about what advice she would give to parents who might be facing a difficult diagnosis with their child, Jenny said: “I would definitely say go to First Step.

Mum Jenny Hooper, with Phoebe, one-week-old at Great Ormond Street Hospital. Photo: Rob HooperMum Jenny Hooper, with Phoebe, one-week-old at Great Ormond Street Hospital. Photo: Rob Hooper

“It’s difficult the first time but within five minutes of being there, they make you feel so welcome.

“We try to support First Step with all of their events. It’s something we’re very passionate about because it’s heart-breaking to think that they might have to ever turn people away.”

First Step began in October 1988 in response to a plea from some parents of young children with special needs and/or disabilities.

They felt they, and others in similar situations, could benefit from a group where they would be able to talk, share experiences, and provide support for each other in a non-judgmental environment.

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.

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