No matter what we say about JHHHT’s help for us will not be enough. We can't recommend them enough as they've been extremely helpful particularly with our daughter's transport requirement. We consider ourselves very lucky to have been introduced to such an organisation. We have never been let down by them. They are professional and hard working. We would love to see them growing, so people like our family will be able to benefit. Thank you very much Joshua Hayday Helping Hand Trust.–Parents of M.
JHHHT has helped the Kaleidoscope children and families by improving the overall quality of their lives in so many different ways. So many aspects of daily life that most of us take for granted as being normal are often so difficult for parents who are caring for very complex life limited children. JHHHT has provided taxis to attend hospital outpatient appointments, to get to shooting Star children's hospice for respite stays and even on one occasion, for a parent to attend their child's funeral. Even if some of these parents could drive they would not be able to give care like administering oxygen and drive a car. JHHHT has helped to improve quality of life by funding massages for Kaleidoscope children and their parents to relieve the physical stress of caring and to ease discomfort for the children; it has funded sensory toys which are expensive and often unavailable in shops; it has funded extra therapy for a child when NHS funding was not available. JHHHT even funded a short break for a bereaved mother and her parents to enable them to visit the cemetery where her daughter was buried which she had not been able to do alone without the support of her parents. Both Karen Stewart, Kaleidoscope Play Specialist, and myself know that without the support and funding that Kaleidoscope families receive from JHHHT, many of our Kaleidoscope children and families would not be living and trying to enjoy their lives to and be as normal as possible for as long as possible. We are lucky to have JHHHT support and funding as without this Karen and I would struggle to provide all the things that really matter for life limited children and their families.–Sandra Hall Kaleidoscope Children's Palliative Nurse Specialist.
Thank you so much for your most generous donation of £4,000 to Richard House Children’s Hospice- £2,000 towards our transport fund and £2,000 towards our music therapist. Your support is greatly appreciated and will go far in helping the children and families who use Richard House. –Sarah Dyer Trusts and Foundations Fundraiser
By funding transport costs JHHHT has enabled a number of children to access services at Haven House Hospice. Baby L suffers from Leigh’s disease, a neuro-degenerative condition causing severe seizures which require emergency rescue medication. This is the second child born in the family with a neuro degenerative condition. The family used the hospice for end of life care when their baby girl died in 2014. The family have limited financial resources and live ten miles from the hospice with limited public transport links available. The fund enabled the family to use a taxi service for a number of events at the hospice in recent months. This included our annual memory day event, a family day over the summer where they met other families and a recent photo shoot where professional photographs were taken of parents and baby L. A is an only child with severe cerebral palsy. A’s mother is a lone parent and does not drive. JHHHT has enabled a taxi service to bring A to the hospice for weekend respite breaks. ZK and IA are two sisters with life limiting conditions who access hospice for occasional respite care. The family do not have a big enough car to transport oldest child in her wheelchair. JHHHt has enabled us to provide a taxi to drop girls to the hospice and home after respite stays. Family of Baby C would like to access music therapy at the hospice. Mum is unable to drive and Dad works full time. The transport fund has enabled this family to start accessing music therapy during the week. And K, a mother of a seriously ill child aged 1 year 8 months has been able to access music therapy “I don't work so wouldn't be able to afford the cost for Logan to attend Haven House as we have to get two buses which are long journeys. It can be a stressful trip on public transport as we have to let some busses go past as there is no room for wheelchairs. I also find myself rowing with some people as we get told to fold the wheelchair as people see it as a normal pushchair. Also L doesn’t like too much noise so a busy bus can stress him and bring on fits. Having a taxi pick us up for sessions like music therapy makes things stress free for both of us and makes coming to Haven House a happy experience.” –Eileen White Director of Care Haven House
We would like to thank you for the £1000 contribution towards a new Fleximort system. It is used in the period following the child's death, and is a modern system to preserve the child's body in a climate controlled room. Families stay in our family accommodation, and can then spend more time with their child and have peace of mind knowing their child's body is kept in the best possible condition leading up to the funeral. Many families with younger children use this period to say their goodbyes in a calm and serene controlled environment at the Hospice. Whilst the family are at Haven House they have as much access as they need to sibling and couples' counselling and the support of our bereavement sister with practical arrangements. From the feedback we receive from families whose child has stayed in our Butterfly Suite we know how important this time has been to them. –Anne Spong, Haven House Children's Hospice
Our thanks to the Trustees for the generous donation of £1400 towards the costs of providing our Cambridgeshire 0-5 support group, which brings together families with young children with physical and learning disabilities spina bifida and hydrocephalus. The group has continued to go from strength to strength, becoming a source of peer support for families with similar experiences. –Danielle Curtis, SHINE