Imagine never being able to sit without pain or relax with your family while you watch TV and play. This is life for an eight-year-old Pembrokeshire girl who is now getting a specialist chair donated by Newlife Foundation for Disabled Children working in partnership with retail giant Marks and Spencer.
Lleucu Griffiths from Blaenffos in the community of Boncath, has a life-limiting genetic condition which means her brain is abnormally large, she has epilepsy, is fed through a tube and both hips are displaced and grate on her pelvis as they slowly, painfully, disintegrate.
Support for her posture is vital to help stop the deterioration of her skeletal system, but she finds her wheelchair too uncomfortable and the family sofa doesn’t provide the support she needs – which leaves only her bed, but this takes her away from her twin sister Adwen and their mum Tracy.
Lleucu needs a special seat known as a P-Pod, which would give her all the support she needs to be really comfortable and let her relax. This is especially important as Tracy has recently been told by doctors that Lleucu’s condition has worsened. It will mean she can spend more time with her family.
The cost of the equipment – £1,365 – prompted mum Tracy Griffiths to turn to Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness for help.
Tracy said: “When Lleucu and Adwen were born the doctors said Lleucu would be lucky to live past the age of one – and although we don’t feel like she is on borrowed time, we do just want to make life easier for her whenever we can as she really does have a difficult time of it.
“She is in a lot of pain. Her legs are splayed like frogs’ legs and doctors are trying to push them back together. Her condition is something she will always have to deal with, but a P-Pod will give her somewhere to relax and be comfortable. She uses a-Pod at the hospice she visits once a year and she sits in it for hours without a single complaint.
“With one at home, she will be able to sit in the living room with us, and at eye-level too, be able to be more included in family life, especially as the chair has a wheeled base so it is mobile. We would be able to push her around the house as we have had the doors widened, so she could always be with us.”
M&S has worked in partnership with Newlife since 2006 as part of its Plan A commitments, donating returned products and clothing samples that cannot be sold, to the charity to be resold or recycled. The majority of the donated products are sold in the Newlife SuperStore in Cannock and the charity recycles the remaining items, all to raise money for children with disabilities. In October 2010, M&S launched a grants scheme, which has specifically helped fund over 200 pieces of essential equipment, totalling £630,000 for disabled children in local communities across the UK. Jacquie Leonard, Community Programme Manager at Marks & Spencer, said: “Our partnership with Newlife is not only great for the environment but it also helps to improve the lives of disabled children by providing much-needed specialist equipment. We are delighted to be able to support such a vital charity.”
Sheila Brown OBE, chief executive of Newlife Foundation, added: “Our partnership with M&S benefits hundreds of children and their families. It is very encouraging to see the efforts of M&S in helping to improve the lives of disabled and terminally ill children within the local community and across the UK. Equipment that costs hundreds to several thousands of pounds really can transform lives. We are very grateful to everyone involved and would encourage other groups and individuals to keep fundraising to help us make a difference.”
Newlife has helped provide almost £11,000 of equipment for ten under-19s in Pembrokeshire. However, the charity is currently working with another two families in the county with equipment needs totalling £1,927.
To find out more about how Newlife supports families in the county, go to: www.newlifecharity.co.uk/pembrokeshire. The website includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email firstname.lastname@example.org – and shows specific ways people can help support children with disability and terminal illness and their families in Pembrokeshire.
Pictured: Lleucu Griffiths