Opportunities for holidays or short breaks can be few and far between for many families living with Batten disease. This can be due to a range of issues such as finance, accessibility or lack of appropriate facilities. The following are a list of options that may provide ways of overcoming these obstacles and offer some families the chance to experience a holiday or short break that they had not imagined possible.
Unfortunately not all of those listed will be suitable for everyone. It is important that you contact any organisation you are considering applying to and ensure that they may be able fully meet your family’s particular needs.
We also appreciate that many families who have suffered bereavement may also be appreciative of some time away from home; hence we have included a few organisations who can offer support in these circumstances.
Although we have attempted to select only reputable organisations, the BDFA is not able to specifically endorse or vouch for any of those listed. Therefore we advise that you remain cautious in your dealings with anyone until feeling confident you have established their legitimacy.
Alice’s Escapes is a charity run by a team of volunteers committed to providing free holidays for families with a seriously ill child. The idea for Alice’s Escapes came from the Torbay Holiday Helper’s Network (THHN), based in Devon. They aim to provide similar opportunities for eligible families to ‘escape’ and enjoy some peace and relaxation in the beautiful Lake District. All accommodation, food, outings and activities are provided with the compliments of local businesses. Options for wheelchair accessible accommodation may be limited and it is important that you request this when applying.
Torbay Holiday Helpers Network is a voluntary organisation comprising a network of hotels, accommodation providers, tourist attractions and businesses who are all committed to helping give away free fun filled holidays, to families who have seriously ill children, families who are recently bereaved – having lost a child or parent and to families who have a terminally ill parent. Please note that holidays are only awarded by referral via NHS medical professionals, social workers or registered charity support workers.
The Adamson Trust is a Scottish charity able to give financial help with the cost of holidays or respite breaks for young people aged 17 and under with a physical, mental or emotional disability. Individual families can apply and, in addition, they accept applications on behalf of groups of children, organisations and other registered charities.
Sebastian’s Action Trust offer respite breaks, free of charge, in a purpose-built holiday house. They hope to provide families with a haven away from many of their daily trials – a place where they can just be an ordinary family, enjoying special times together. Their holiday home, The Bluebells, is open to any child or young person who has been diagnosed with a life-threatening or life-limiting illness. Families are able to stay for up to six nights at a time and are invited to bring family and close loved ones if they wish.
Dream Makers run and maintain 4 holiday homes on a Holiday Park Site in Torbay, Devon. They provide holidays for Care Trusts, Social Services, children from Children’s Hospices, Hospitals and many children whose families have gone through months, and sometimes years of treatment, operations, therapy and terminal illness. Each home is equipped with all the latest equipment CD players, microwaves, plasma flat screen DVD, playstation, endless toys, games, books and much more. Before considering applying to Dream Makers it is important to clarify whether these properties will meet the needs of your child in terms of accessibility etc.
The Family Holiday Charity is an organisation that provides short breaks in the UK for children and their families. These are families that face daily hardship made worse by the likes of illness, bereavement or disability. They offer those families in difficult circumstances a much needed break. Families must be referred to the Family Holiday Charity by a referring agent who knows the applicants’ circumstances, such as a support worker, a health worker, a teacher, Citizens Advice Bureau worker or social worker.
Happy Days Children's Charity fund and organise holidays, residential trips, days out and theatre trips throughout the UK for disadvantaged young people with special needs. They help young people in special needs schools, hospitals and hospices as well as individual families. You can apply for a family holiday if you have a child or children (aged between 3 and 17 years) with special needs. These are short break holidays by the seaside or in the countryside, usually in the UK.
The Donna’s Dream House Charity in Blackpool offers free holidays to children and teenagers with serious or life-threatening illnesses, and also for the siblings of a child who has passed away in the last two years. Nominations can be made by anybody who knows the family concerned. The holidays are free as there is no charge for accommodation, and daily meal vouchers are provided for a neighbouring cafe. There are kitchen facilities for you to prepare your own meals, and passes are provided to many of Blackpool’s attractions. There is also a special Teens’ Centre with state-of-the-art facilities for those aged 14-24.
The Harriet Davis Trust owns four properties in Tenby, Pembrokeshire. These are for families with children although disabled adults may use a property if it is not requested by families.
Three houses are adapted for wheelchair users with facilities such as hoists provided. Their latest house, “Caerwen” is adapted to provide a safe and secure environment for children with autism and other learning difficulties. The holidays are offered at reasonable prices as they are charged at economic rather than commercial rates. The charity is also able to offer a limited number of grants to families in genuine financial need.