Looking after Alicia

FAMILY Lee and Sharon Pannell with their daughters, from left, Alicia, eight, twins Courtney and Scarlett (far right) and Kayleigh, 10.
FAMILY Lee and Sharon Pannell with their daughters, from left, Alicia, eight, twins Courtney and Scarlett (far right) and Kayleigh, 10.

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The kindness of strangers never fails to surprise Sharon Pannell.

Each time someone posts her a few pounds after hearing about daughter Alicia’s struggles, she’s touched by their action.

And when envelopes with cheques for as much as £1,000 drop through the door she simply shakes her head in disbelief.

Torn between not wanting anyone to feel sorry for them and needing to raise funds to make life better for their daughter, Sharon and husband Lee are grateful for every penny they receive. ‘It makes me feel like a proud mum that people do want to help us,’ explains Sharon. ‘It amazes me to be honest.

‘We appreciate it whether it’s £1 or £1,000, it all goes in the same pot.

‘It just amazes me that so many people are willing to help.’

The last few years have been a whirlwind of fundraising as Alicia’s needed everything from a new bath to a special chair.

While the NHS provides some of the equipment the eight-year-old needs, not all of it can be provided for free, leaving the Pannells no choice but to raise the money themselves.

News readers have already donated more than £2,000 to the latest project to buy Alicia a new chair that will allow her to sit up in comfort like her three sisters, 10-year-old Kayleigh and twins Scarlett and Courtney, three.

While Sharon thinks the NHS should provide more to help with severely disabled Alicia’s care, she knows there’s not enough money to go round.

It seems fundraising is just one of the challenges you face when your child has complex needs – but Sharon and Lee have had to find that out as they’ve gone along.

Alicia can’t walk or talk and needs 24/7 care. She was born 10 weeks prematurely and a brain haemorrhage left her with a condition called hydrocephalus. She spent seven weeks in intensive care and a shunt was fitted when she was six months old to drain excess fluid from her brain.

‘We didn’t know what hydrocephalus or a shunt were,’ remembers Sharon. ‘My husband’s first question was “Is she going to die?”’

The doctors reassured them that the condition could be treated but if the shunt became blocked, and they didn’t know how to spot the signs, it could prove fatal.

When she was nine months old, Alicia was diagnosed with cerebral palsy after the couple realised she couldn’t sit up or hold her baby toys. And they’ve only recently found out she also has epilepsy.

The full extent of their daughter’s condition came as a shock as there had been no indication anything was wrong during pregnancy and Kayleigh had also been premature.

‘I blamed myself for a long time,’ says Sharon. ‘I went to the consultant to find out whether it was me who’d caused the problems but he told me it was bad luck, it was nothing to do with me.

‘Some people can have a child at 25 weeks and it’s a hard road but they get through it and have a normal child. I was just very unfortunate.

‘I often think to myself “What would she be like if she was a normal child?” I think she’d be the little minx, the mischievous one.

‘It’s not Alicia’s fault, it’s just what life has dealt us. We do often think why us? But I think you’ve got to be special to cope and take on the responsibility.

‘We’ve gone eight years now and I think “How have we managed that?”

‘We have been through so much in that time but I wouldn’t swap her for all the world. I wouldn’t give her up for anything.’

The family, from Gosport, say Alicia brings them so much joy and they take pride in new achievements she makes.

But having one child who needs such constant care has taken its toll on family life.

Alicia sleeps badly and can scream for hours at a time. It’s exhausting for Sharon and, as a result, Alicia now has respite care two nights a week to give the rest of the family a chance to catch up on their sleep.

Holidays abroad are out because they worry about what would happen if Alicia had a medical emergency and day trips have to be meticulously planned.

‘We have four girls and they all need to have a childhood too,’ says Sharon. ‘We try and get away without the kids sometimes just to recharge our batteries and be a couple.

‘If it wasn’t for Lee I couldn’t do this, that’s for sure. A lot of my friends who’ve got disabled children have split up because of the stress. I fully understand that because it’s hard.’

She adds: ‘People say to me, “I don’t know how you cope,” and I’m proud that people think that about me but I tell them I’m not super mum.

‘People see me as this jolly person but I put on a front without realising I’m doing it.

‘There are times when I feel like I can’t cope any more. I’m human, I can only take so much. I try to snap out of it but sometimes it’s hard.’

FUNDRAISING TO PAY FOR EQUIPMENT FOR ALICIA

The cost of equipment made specially for disabled children always staggers Sharon Pannell.

A specialised chair that will hold Alicia upright, providing the support she needs for her body and head, will cost £5,214.

And once they’ve raised enough money for the chair they’ll need to pay for an outbuilding to keep her wheelchair in to free up space in Alicia’s already cramped bedroom. While a disability grant will fund the alterations needed to the outside ramp and to widen the door, there’s no money available to pay for an outhouse.

In total, they’ll need to raise around £10,000 – but the chair should last her the rest of her life and will make a massive difference to Alicia.

She’s outgrown her old specialised seat but can’t stay in her wheelchair all day. The only alternative would be to lie Alicia down on the floor, or on the sofa.

‘There’s always the risk that she’ll fall off the sofa and I don’t want her lying on the floor,’ says Sharon.

‘If she’s sitting up like the other children she can see all around and she knows exactly what’s going on and what we’re talking about. Just because she is different, I don’t want her to be treated differently.’

Kind News readers have already donated more than £2,000 and children at Kayleigh’s school – Elson Juniors in Gosport – held a fun run, raising more than £600. And all Sharon’s time and effort at the moment is going into organising an action-packed day of activities on Saturday June 4.

The family will host a summer fete at Gosport Borough Football Club’s ground, in Privett Road, from midday until 4pm. Entrance will be 20p and there will be lots of games and stalls to enjoy.

In the evening they’ll hold a second event, with a live band, auction and raffle. Local band Mirror will play and auction items include an Arsenal Football Club shirt, signed by Ian Wright.

Putting on the events is a lot of hard work but Sharon says Alicia makes it all worthwhile.

‘She’s gorgeous, we get so much back from her,’ she adds. ‘We call her Princess Pea and she is like a little princess and she knows it. She’s got a lovely little character to her and she’s ever so funny.’

To buy tickets, find out more or donate items for the raffle, call Sharon on (023) 9235 7473, or log onto alicia-pannell.org.uk