Sadly it is not always possible to attain the specialist equipment from statutory services that a child or young person living with Batten disease requires. The following are just a few of many charitable organisations who have particular experience and/or expertise in assisting families to purchase or acquire this equipment.
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.
The Act Foundation
ACT provides grants to individuals and other charities, principally in the UK, with the aim of enhancing the quality of life for people in need, particularly those who have a physical or mental disability or the aged.
Our grants generally fall into the following areas:
Building – funding modifications to homes (where a Disabled Facilities Grant (“DFG”) has already been awarded), charities, special schools, hospices etc.
Equipment – provision of specialist wheelchairs, other mobility aids and equipment including medical equipment and technology to assist independent living
Respite – help towards the cost of short-term respite breaks at registered respite centres
ACT provides grants of up to £2,500 to individuals with the aim of enhancing the quality of life for people in need (specifically people living in poverty, those who have a physical and/or mental disability or the aged).
Tree of Hope helps children and young people with a disability or illness by supporting their families to raise the funds that they need to pay for specialist care that is not available freely through the UK health care system.
Tree of Hope exists to unlock the world of private medical interventions and equipment, for those who need to fundraise towards the associated costs. They do this by supporting families through their fundraising journeys to raise money for the medical treatment, therapy and equipment they need. Amongst many other things, the support team at Tree of Hope relieve the stress from families by offering help and advice on their fundraising campaigns (from PR to trusts & foundations and social media), providing fundraising materials and managing campaign funds.
Often children and young people with disabilities remain excluded from a lifestyle which other people may take for granted. They want to join in and take part in the same sorts of activities, within their capabilities, as other children. They want to gain more independence from their parents as they get older, but are often prevented from doing so.
We believe the provision of specialised equipment has a direct and immediate impact on a child’s quality of life and independence, and is vital in helping them to overcome obstacles and achieve their potential. Equipment can include wheelchairs, walking frames, tricycles and other mobility aids, as well as, multi-sensory equipment and other information technology.
To find out how to apply for a grant please visit their website: http://www.childrentoday.org.uk/
Newlife Nurses are a gateway to information, grants and care. They staff a national Helpline which supports and informs families, whether they have just been told of their child’s disability or need help accessing local services. The Newlife Nurse Helpline is free, confidential and trusted.
Nothing is too small or too important to discuss with a trusted Newlife Nurse. In addition, Newlife Foundation offers grants for essential medical equipment. If the statutory health and social care services cannot help, Newlife Nurses can progress a grant for equipment direct from Newlife funds or they can provide information of grants available nationally from other sources. They also operate a “Just Can’t Wait” equipment service and therapeutic toy loan scheme.
NBCS supports children and young adults with vision impairments through a grants programme providing funding towards items and activities which are in support of the charities vision and where no source of statutory funding will pay for the items or activities necessary.
React helps families caring for a child with an illness which is life-threatening or has the potential to shorten their lifespan. Their purpose is to provide funding in situations where none is available elsewhere. They will consider applications for specialist or medical equipment (unavailable through your Health Authority).
They help families across the UK who are raising a disabled or seriously ill child or young person aged 17 or under. They will look at any grant request that relates to the needs of a disabled or seriously ill child, young person and their family.
Please visit: http://www.familyfund.org.uk/grants
They provide practical, tangible help that makes an immediate difference to those children and their families. They aim to provide whatever is needed, whether it be medical (such as monitoring equipment), for basic care (like feeding tubes or hoists), for sensory play or mobility equipment.
They operate a small grants programme for young people between the ages of 18 to 26 who have a disability and/or complex health care need. Applications are welcome from or on behalf of any young person in this age group. Support will also be considered for families (including siblings) who care for a young person who falls within this age bracket.
Applications can be for household items (kitchen appliances, furniture, clothing, beds, bedding and carpets), play & exercise equipment, music equipment, computing and games equipment, mobile phone, leisure activities, hospital visits, driving lessons, sensory items, jet baths, holiday, removal costs and funeral expenses. Other items, recommended by a medical professional or social care worker, may be considered at the Trustees’ discretion, and are subject to the Conditions of the Award.
Please visit: http://www.truecolourstrust.org.uk/individual-grants-uk/
Whizz-Kidz can help with a broad range of mobility equipment to give disabled children independence at home, at school and at play. The mobility equipment they provide includes manual wheelchairs, powered wheelchairs, buggies and adapted trikes.
Please visit: http://www.whizz-kidz.org.uk/get-our-help/equipment
The Daisy Garland Trust offers help and support to those living with epilepsy. The Daisy Garland Trust can provide epilepsy alarms to those families who need them. The trust can also offer support and advice about the Ketogenic diet. For more information please visit their website:
The Muir Maxwell Trust can also provide families with epilepsy alarms. These alarms can provide families with peace of mind and allows many families to have a good night’s sleep. They can also offer help and support to families of children living with severe epilepsy. To find out more please visit their website:
This is a free service which can help you see which benefits you may be entitled to clam. They can also look for grants which you may be able to apply for. On their website they have a benefits calculator which is very helpful and can give you fast accurate information.
The Boparan Charitable Trust aims to help children and young people up to the age of 18, throughout the Uk, who are disadvantaged either through poverty, disability or life-limiting conditions.