Jess’s Story

This is Jess. She suffers from a rare condition called Rett syndrome that, among other things, has left her non-verbal.

But non-verbal doesn’t mean non-communicative. It means that Jess expresses herself in her own way, often through technology. And non-verbal doesn’t mean non-curious. Because Jess has a keen interest in what’s going on around her.

Jess’s voice is her eyes

Once a cheeky, inquisitive, busy toddler, Jess kept her mum Liz on her toes. Today, she keeps mum on her toes for very different reasons. Jess’s condition, diagnosed at the age of two, means that she now requires 24/7 care, uses a wheelchair, is tube-fed and non-verbal.

But that doesn’t stop Jess. She’s still just as cheeky and inquisitive, loves cuddles and asks a lot of questions – just in a different way. Jess’s way.

The first thing Jess said when she learnt to communicate with a flip-chart was: “I love mummy.”

Now that she’s mastered Eye Gaze technology, when you ask Jess what she would like to be when she grows up, she replies that she just wants to be herself – “Jess!”

And when you ask Jess how she feels about spending the weekend at Buckets and Spades, she responds with “Great!” Very simply, Buckets and Spades is a home away from home for children such as Jess.

Jess’s mum, Liz, has a voice too

Despite Jess’s complex needs, the broken sleep every night, the frequent hospital visits and strict daily routine that must be followed all day, every single day, to care for her, Liz copes like any loving mother would – without complaint or concern for her own needs.

But over the years this has taken its toll on Liz and her family. “We had no support at home. Her care was purely down to us – 24 hours a day, seven days a week. So when Jess started going to Buckets and Spades, our whole lives changed. For one weekend a month, we can relax and recharge, knowing that Jess is happy, safe and cared for by specially trained staff, supported by specialist equipment. We can also go swimming and camping with our younger daughter, Anna, or for walks on the beach without a wheelchair. I can’t express how grateful we are to Norwood’s Bucket and Spades for giving us this. It’s life-changing.”

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