A Goole couple are anxiously waiting to see if their application for funding from the ‘Children in Need’ charity has been accepted, which would allow them to build a dream ‘sensory room’ for their poorly little boy.
If successful, the bid will mean parents Tessa Whiting and Liam Parry can concentrate on getting together a whole host of specialised equipment to make that dream a reality.
Nineteen-month-old Lucas suffers from a severe form of cerebral palsy known as Spastic Quadriplegia, which affects his entire body. The resulting muscle stiffness means that Lucas may never be able stand or walk and sadly, there is no cure. Tessa and Liam, from Swinefleet, discovered Lucas had the disabling condition when he was just seven-months-old, and he has also recently been diagnosed with epilepsy. This latest development has resulted in Lucas been hospitalised twice in the last six months alone, admitted onto the intensive care unit at Scunthorpe Hospital. Because of his condition, Lucas suffers from a severe visual impairment, so lights and sounds are vitally important to his development and quality of life. The present round of fundraising will hopefully provide a sensory room for Lucas at his home, filled with specialised equipment to help him experience as many sensations as possible. The total cost of the equipment still required is around £7,000.
With the help of the Goole Lions Club, Tessa has written to several businesses to ask for their help. Specsavers in Goole raised almost £200 over the Christmas period with their fundraising efforts, and Tesco provided a voucher, with which Tessa bought mirrors and a beanbag for the sensory room; a local charity supplied a specialised ‘bubble wall’, worth £430; the Goole Lions are also making a donation, and offering on-going support. Lucas receives help from a whole host of local services, including physiotherapy, which helps him with his stretching, and the occupational therapy service have provided a pushchair and standing frame. As he gets older, a state-of-the-art wheelchair will be on the shopping list. Lucas also regularly sees a visual impairment specialist, and sees many different consultants on an on-going basis.
Due to the huge amount of medical appointments the family needed to juggle, Tessa – a former primary school play co-ordinator – left work last December to become a full-time mum. Together with Lucas, the pair are enjoying lots of fun activities and Tessa is relishing dedicating her time to them packing as much fun as possible into each day.
Tessa told Our Goole: ‘The local community have responded brilliantly, everyone’s been fantastic.’
Liam’s work colleagues, at the Humber Centre in Willoughby, held a charity night last year and raised a staggering £3,000 to help support Lucas and his family. Looking to the future, Tessa and Liam remain positive, mainly due to Lucas’s amazing resilience and defiant attitude. Tessa told us: ‘Lucas copes so well with his illness. He’s always smiling, and really keeps us going. We’re quite confident about the future given his amazing attitude – he won’t let any of this beat him. He’s so very determined. The consultants said he’d never sit up or roll over – and he can do both! He’s such an amazing little boy!’