Cerebral Palsy is a life limiting condition, both in terms of quality and life expectancy. Although it is non progressive, there is no known medical cure. Neave will always have this condition but the way it effects her can be changed, the more therapy she does, the more she will learn to do for herself. The more Neave does for herself, the better her quality of life and expectancy will be.
We are extremely lucky to be able to access the services provided by The Legacy Rainbow House. They provide Neave with Conductive Education and is the only place in the North West that offers this. Conductive education is not a core NHS service so has to be funded independently by The Legacy Rainbow House and parental contributions.
In the current economic climate charities like The Legacy Rainbow House are finding it harder and harder to access grants and funds to sustain their work. Outcomes for the 70 or so children like Neave who access The Legacy Rainbow House are difficult to measure in pounds and pence ; for example, how much will it cost for Neave to learn to sit unaided? Undoubtedly if you do a financial breakdown it would cost a lot of money, but in the picture of what that initial skill then leads to in his future it is priceless and cannot be quantified.
Neave and her friends cannot afford for The Legacy Rainbow House to be so financially squeezed, because it may start to affect what sessions can be offered. We, as parents, are trying raise £3,000 a year to help sustain the services at the level they are at – it sounds a lot but the outcomes for this £3,000 are far, far greater than any other investment.
Although Conductive Education forms the majority of Neave’s therapy, we are accessing more services provided locally that will help Neave develop. They are:-
Like Conductive Education, none of these are core NHS services also have to be funded privately and due to the unique nature and high levels of expertise required to deliver these services, by definition this makes them expensive.
Zoë’s Place Liverpool has now been in operation for 16 years, caring for babies with life-limiting or life threatening conditions. The Hospice does not have a set catchment area and welcomes babies from all over the UK. Zoë’s Place currently cares for 50 babies and their families on a one to one basis, 24 hours a day, 7 days a week.
Zoë’s Place relies upon the generosity of the public, grant making trusts and corporate partners to raise our current running costs of £1,300,000 per annum. Zoë’s Place currently benefits from a Department of Health Grant to enhance their services.
Neave goes on her holidays for two nights a month to Zoë’s Place and there she receives physiotherapy, hydrotherapy and has lots of time to play in the sensory room.
As well as Neave having a lovely time with the brilliant staff and fun sleep overs with her friends it also gives her Mum and Dad the chance to recharge their batteries so they can continue to look after Neave.