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Jess and Anna

Ask nine-year-old Jess for her thoughts about Noah's Ark and, speaking through her computer, they couldn't be clearer: "Feel love, feel love, feel love, feel love."


For many families a visit to the panto is a winter highlight but, if your child has complex needs, theatre trips, parties or ice skating can just feel too difficult. Noah's Ark Family Activities are all about making these treats possible - and they mean the world to the families taking part.

"We've got such lovely memories from the days you've put on," says Jess' mum, Liz. "We would always prioritise them in our diaries because we know we will have a lovely day.

"It's so hard to find things that are accessible for children's like Jess. You can book standard days at theme parks, but there are so many things that Jess can't do  - because it's not wheelchair-friendly or it's just not geared up for her."

Jess, who has been supported by Noah's Ark for the past five years, has Rett syndrome  - a rare genetic disorder which results in severe disability; in Jess' case this means very limited movement.

While Jess has periods of being relatively healthy, at other times her frequent epileptic seizures and chest infections make family life a cycle of emergency calls and hospital admissions. Even when she's well, Jess requires 24-hour care, which places huge demands on her family.

Jess is non-verbal and communicates by Eyegaze technology. Bright, funny and quick to learn, her ability to use the technology has come on in leaps and bounds allowing her to really make herself heard.

Says Liz, "She's hilarious; so much fun to be around  - her communication with her Eyegaze is just amazing. It means we know what she likes... and what she doesn't like. If you ask too many questions about how her day went she'll tell you to 'just stop' - like any school-aged child really!"

Jess has a six-year-old sister, Anna who copes brilliantly with her sister's condition, although Liz is aware of the stress that's often places upon her. "Even if you're with Anna, you're still half listening out for Jess or thinking 'does she need anything?' So it's very hard on Anna."

To help Anna, a Noah's Ark volunteer visits fortnightly. "So many people come to the house for Jess; the carers, the physios, the nurses. Having someone come for Anna makes her feel special and important."

Anna has started taking part in Noah's Ark sibling activities too. "She went to Legoland and had such a good time. Noah's Ark is the only place that offers anything for siblings and that is so important.

"As a family we just find Noah's Ark totally invaluable. I don't think we would have coped over the years, especially when Jess was so sick."

And, according to Anna, "Without Noah's Ark, Jess wouldn't have Specialist Carers and I wouldn't have met so many lovely people. I love the days out and I never want Noah's Ark to stop. Noah's Ark is awesome!"

HELP US BRING THE ARK TO LIFE

Together we built The Ark. Now help us bring it to life for children like Jess and Anna.

Alternatively, you can donate £10 by texting NOAH002 to 70191

Text donations will be processed and administered by the National Funding Scheme (Charity No. 1149800), operating as DONATE.
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