TWO West Sussex mothers are fighting to provide proper facilities for their children, who both have quadriplegic cerebral palsy, epilepsy and visual impairment. Ground floor facilities at their homes are essential, but will cost each of the families a minimum of £30,000.
Now Laura Moore, of Worthing, and Vicki Thorne, of East Preston, have joined together in a concerted fundraising effort which they hope will enable them to achieve their targets more quickly.
Laura’s son, William, is now two. He was born by emergency C-section after he stopped moving at 37 weeks.
He had suffered from a lack of oxygen and shortly after birth started to have seizures.
William has a severe dystonic motor disorder which means that he is unable to sit unaided and is immobile. He struggles to use his hands and has needed intensive therapy to help him learn to do things normally taken for granted.
Laura, said: “Neither of them can sit or stand unaided, they have little control over their limbs and they cannot speak.
“Due to their disabilities they both require a bedroom and bathroom on the ground floor. Whilst the council does provide a grant for this it does not cover the full cost of all the adaptions required to make our homes fully accessible.
“Our next project is to build William a bedroom and bathroom downstairs as he will not be able to get upstairs to his existing room.
“We also need to make the garden accessible for him and adapt the driveway to make it level so it is wheelchair accessible. We have already changed a lot of our home to make it open plan and accessible for William and have widened all the doorways.”
A council grant of around £30,000 is expected to be available to both families, but the overall cost will be at least £60,000.
Both families need to raise an overwhelming amount of money. They were both fundraising separately until they heard of each other and have recently joined forces to raise money together in a bid to host some larger events.
Iona May, who is five, is Vicki’s daughter. She was born nine weeks premature, and as a result of a complicated birth has quadriplegic cerebral palsy. Doctors thought she might not live past 72 hours but she fought on.
She cannot sit, stand, walk or talk and is registered blind and has just had major surgery for bilateral hip displacia and is recovering in hospital. Iona May has just started primary school at Palantine Special Needs School in Goring,
She is reliant on the assistance of her family and carers for all aspects of daily life. Her grandmother, Andrea, is helping with fundraising.
At the moment Vicki has to carry her up and down the stairs every day, which is hard for her because she is getting too big to carry - and a special downstairs room is essential.
Carers come in to help look after Iona May, but due to health and safety regulations and insurance policies they are not allowed to carry her up the stairs or lift her around the house.
Vicki says it is also very dangerous when she has to bath Iona May because the existing bathroom is too small for specialised equipment.
She has to lift her in and out of the bath, which is very difficult, especially when she is wet and slippery.
The house needs to be adapted to accommodate Iona May and her wheelchair, She needs a bedroom and bathroom on the ground floor, as well as having doors widened and thresholds lowered for access.
Now the two families are organising a series of events in coming weeks and have appealed for support.
Their joint fundraising kicks off on September 24 with a Pamper Evening at The Keystone Centre in Raleigh Way, Goring. Facials, pedicures, manicures and massages will be among treatments on offer and tickets include one free treatment and others can be bought. Nibbles and wine, stalls from local businesses, jewellery, and food tasters from My Secret Kitchen will be other attractions.
It steps up to a major auction on October 15 at Highdown Vineyard from 7.30pm, which will be hosted by celebrity Ian Towning from ITV1’s The Real Deal.
The auction will include a number of pieces of jewellery from local designers, art from local artists, support from local hotels, restaurants and more.
Laura said: “We are still collecting donations so please contact us if you would like to donate an item.
“Other local businesses and artists can still contribute and anything anyone else wants to donate will be welcome. We aim to raise more than £1,000 at the event and would love as many as possible to join us.”
Entry is by ticket only and tickets are available now. Please contact Laura at firstname.lastname@example.org to get yours.
A wine-tasting and tour at Highdown Vineyard will take place on November 10 at 6.30pm.
To help with a donation or to buy tickets for forthcoming fundraising events, ring Laura on 07515 870713 or Andrea on 07999 648647.
To read more about William and Iona May, see their websites: www.pleasehelpustohelpwilliam.com and www.helpionamay.com