To allow us to help families on their mito journey, we have collaborated with a variety of charities throughout the UK to become an information hub for any family affected by a mito diagnosis. We aim to provide everything you need to know in one place, making your difficult journey that bit easier. Although you can only apply for assistance directly from us if you have a mito related condition, the links and websites we provide will offer a wealth of information to any family that has been affected by a life-limiting diagnosis.
The charities below offer a wide range of services for your mito journey, but we have taken a special interest in charities that offer memory making services. We believe that enjoying special moments in life is priceless, and family time is most precious when life-limiting conditions are present, so we aim to provide a good mix of memory making services to help you make – and retain – those amazing family memories.
This page is for informational use only. If you have been affected by mito, and wish to contact us for assistance, then please fill out the form on the Apply for Assistance page.
Medical Equipment, Household Items and Treatment Grants
Family Fund is the UK’s largest charity providing grants for families on low income raising disabled or seriously ill children and young people across the UK.
They believe that all families raising disabled or seriously ill children and young people should have the same opportunities as others. Beginning with the most vulnerable, those on low incomes, and considering all conditions against our disability criteria, we aim to make a difference to outcomes for disabled or seriously ill children and young people and the lives of the families raising them across the UK.
Family Fund provide grants for a wide range of items, such as washing machines, sensory toys, family breaks, bedding, tablets, furniture, outdoor play equipment, clothing and computers.
React is a dynamic charity working to improve the quality of life for children with life-shortening illnesses living in financially disadvantaged households throughout the UK.
The charity’s driving force is the belief that every child should live with comfort, dignity, and the opportunity to participate in life as fully as possible.
React supports children and their families by providing specialist, medical, educational and domestic equipment, which is unavailable through local authority funding. Requests are considered for any item deemed a ‘basic or essential need’ which will improve a child’s quality of life. This past year, React has supplied a wide range of equipment from specialist wheelchairs, beds, baths, and mobility aids, to essential everyday homecare items like washing machines and tumble dryers. In addition React can offer respite mobile home holidays and assist with funeral expenses.
Applying to React is fast and simple. Awards are made every day, and the charity responds immediately to each application for help. React will consider all requests and if you would like to check whether a specific item fits the charity’s criteria, please call 0208 940 2575 where a friendly team will be happy to advise you. An application form may be downloaded from: https://reactcharity.org/.
Our nurses support families, our researchers work to improve children’s health, our dedicated team campaign for a fairer deal and our volunteers and supporters know that 100% of every penny they donate or fundraise will be used for equipment to change a child’s life.
Childhood cancers, birth defects, accidents, diseases and infections can all cause our precious babies, children, and young people to face lifelong challenges. It happens to dozens of children and their families every day.
Newlife exists because if it was your child, you would want the best for them and that’s what we are working for every day. There are now around one million disabled and terminally ill children in the UK. Thousands of them rely on Newlife to get the equipment they need, equipment that has often been refused by the statutory services or the delays in provision mean that the child will suffer unnecessarily. Newlife runs the only fast track equipment services in the UK helping those children in urgent need.
Please visit our website to see the full list of services we provide: http://newlifecharity.co.uk
Butterfly Wishes Network
The Butterfly Wishes Network is a not-for-profit organisation made up of UK-based professional photographers who offer their services free of charge to families of children with life-shortening conditions.
The Network aims to provide families with a photographer who will donate their time, providing a free photo session and a minimum of 10 digital images.
For more information please see http://www.butterflywishesnetwork.co.uk/
The Sandcastle Trust
The Sandcastle Trust is a small charity with a big vision: a future where a diagnosis of a rare genetic condition will not be a barrier to experiencing everything that life has to offer – most importantly enjoying time together as a family.
The charity provides families who have been affected by a rare genetic condition with grants for short breaks and special family days, providing much-needed fun, respite and the opportunity to create positive family memories.
The Sandcastle Trust is unique in that access to their grants does not stop at age 18 and are available to families who have suffered a bereavement too.
For more information on what The Sandcastle Trust offers and to make an application visit their website here https://sandcastletrust.org
Make-A-Wish® UK exists to help children fighting a critical condition to experience their One True Wish. Together, we create life-changing wishes for children aged between 3-17 years old, and bring a lasting impact into their lives.
Wishes are as unique as the children who ask for them – from princess parties, to meeting a favourite celebrity, a desire to own something or do something out of the ordinary. We’ll work with each child to create a special wish experience and deliver lasting memories. But it’s not just memories we’re making with a Wish, we’re making a lasting impact. Wishes bring with them confidence and emotional resilience and a chance for families to reconnect.
If you’re a medical professional, family or friend, you can refer a child for a wish via: https://www.make-a-wish.org.uk/wishes/get-a-wish
If you’re not sure if your child’s condition qualifies, please get in touch and we’ll be happy to help.
The small print: We only grant wishes for children aged 3-17 years of age, who have not had a wish with another wish granting charity.
Financial Advice, Grants and Informational Support
Contact is the charity for families with disabled children. We understand that life with a disabled child brings unique challenges, and we exist to help families feel valued, supported, confident and informed.
Concerned about your disabled child?
Our Freephone helpline advisers can help with any questions you have – from getting a diagnosis for you child, the services and benefits you might be entitled to, to childcare options in the early years and support when your child is at school or college. We can also put you in touch with support groups in your area.
Call our free helpline on 0808 808 3555 or email your query firstname.lastname@example.org. We’re open 9.30am to 5pm Monday to Friday and have access to interpreters.
Order your free copy of The Helpful Guide for Families with Disabled Children
Our Helpful Guide is a little book with everything you need to know – when you don’t know where to turn. Packed with all the essential information the parent of a child with additional needs or a disability might need, the Helpful Guide helps parent carers navigate their way through what can be a confusing system of support and points them to more in-depth help and advice on Contact’s website. Designed for all families with disabled children, it’s particularly relevant for families early in their journey.
To find out more about Contact or to order your free copy of the Helpful Guide visit https://www.contact.org.uk
Turn2us help people in financial need gain access to welfare benefits, charitable grants and other financial help – online, by phone and face to face through our partner organisations.
The Benefits Calculator takes less than 10 minutes to complete and it will tell you which means-tested benefits you may be entitled to, including tax credits.
The Grants Search can help you look for funds that might be able to give you a grant or other types of help.
We also award our own grants from the Turn2us Elizabeth Finn Fund, the Turn2us Response Fund, and the Turn2us Edinburgh Trust.
End of Life Care and Support
4Louis is a UK charity that works across the country to support anyone affected by miscarriage, or the death of a baby or child. We also work to improve the care bereaved families receive from health care and other professionals.
4Louis was founded by Louis’ family in 2009 who found that there was very little access to support and memory making following Louis being stillborn at 38-weeks gestation. Since then, 4Louis has grown, but parents who have experienced a miscarriage, baby or child death are still at the core of everything we do.
We provide staff with the tools and equipment to provide excellent care to these bereaved families by prompting them to offer the opportunity to capture precious memories, take special photos and giving the families extra time to spend with their baby or child in a safe comfortable environment.
We have funded many study days for trusts across the UK and even funded for individual health care professionals to attend conferences, study days and courses to help improve their knowledge and approach to these families.
Child Bereavement UK
Child Bereavement UK supports families and educates professionals when a baby or child of any age dies or is dying, or when a child is facing bereavement. Every year we train more than 9000 professionals, helping them to better understand and meet the needs of grieving families.
Our vision is for all families to have the support they need to rebuild their lives, when a child grieves or when a child dies.
Our mission is to ensure the accessibility of high quality child bereavement support and information to all families and professionals by increasing our reach and plugging the gaps that exist in bereavement support and training across the country and embedding standards in the sector.
Need to contact us? Please follow the link to see how our support team can help you: https://childbereavementuk.org/wp-content/uploads/2016/12/bereavement-services-telephone-support-leaflet.pdf
Together for Short Lives
We are the UK charity for children’s palliative care. We are here to support and empower families caring for seriously ill children, and to build a strong and sustainable children’s palliative care sector – so that no family is left behind.
We directly support children and families through our helpline and the information and resources on our website, which help ensure that families can find the right local services and make the right choices about their child’s care.
We support all the professionals, children’s palliative care services and children’s hospices that deliver lifeline care. We have over 1,000 members, including children hospices, voluntary sector organisations and statutory service providers. By working together, we provide a strong and unified voice for the sector, and help services deliver the best quality care and support tailored to each family’s needs.
We can’t change the diagnosis, but we can help children and families make the most of their time together.
For more information on ways we can support you on your journey, please visit our website: https://www.togetherforshortlives.org.uk/get-support/
Muscle Dystrophy UK
Muscular Dystrophy UK is the charity for the 70,000 people living with muscle-wasting conditions in the UK. We bring together people affected by more than 60 rare and very rare progressive muscle-weakening and wasting conditions.
Muscle-wasting conditions are very rare, affecting just over one in every 1,000 people. As a result, some health professionals may never come across anyone with a muscle-wasting condition and may not know much about them. But we do.
Since 1959, we’ve been supporting families living with muscle-wasting conditions. We provide vital information, advice, resources and support for people with these conditions, their families and the professionals who work with them.
DisabledHolidays.com are the UK’s largest accessible holiday specialist who believe that travel really should be without limits. A personal service where each customer is treated as an individual and each holiday is tailored to meet the needs of each individual person and their family.
Offering the widest variety of guaranteed accessible accommodation and holidays including UK, Overseas (long haul and short haul), Cruise, Ski, Safari and Disney, we offer holidays to meet all needs and tastes.