Working together for a brighter mito future

Supporting Charities

To allow us to help families on their mito journey, we have collaborated with a variety of charities and organisations 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 and organisations below offer a wide range of support for those with life-limiting conditions. We believe that enjoying special moments in life is priceless, and family time is most precious when life-limiting conditions are present, so we as a charity aim to provide a good mix of memory making services to help you make – and retain – those amazing family memories. As a charity we work with the various organisations below to help deliver our own services, so if you have been affected by a mitochondrial diagnosis, and wish to contact us for assistance, please fill out the form on the Apply for Assistance page or contact us on info@thecharliegardfoundation.org for more information. 

However, the organisations and charities below are there to support a variety of families and individuals so please use this page as an information point if you have been affected by a life-limiting diagnosis.

Collaborative Charities and Organisations

All Collaborations
Financial and Informational Support
Medical Equipment and Grants
Memory Making
End of Life

The Freya Foundation

The Freya Foundation aims to raise awareness for the condition called PDH, or pyruvate dehydrogenase deficiency complex. Freya’s parents had no understanding of...

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The Freya Foundation

The Freya Foundation aims to raise awareness for the condition called PDH, or pyruvate dehydrogenase deficiency complex. Freya’s parents had no understanding of this condition and were left to find out more information on their own. This is why they have set up The Freya Foundation. The Freya Foundation's mission is to develop and share information and advice about PDH. By working with doctors and other medical specialists we hope to find out more about PDH including the diagnosis, the different treatments and managing the condition. Visit website >

Genetic Disorders UK

Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. While...

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Genetic Disorders UK

Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. While individual genetic disorders are rare, it is thought that there are currently more than 6,000 diagnosed disorders and new disorders are being identified every day. It is estimated that 1 in 25 children is affected by a genetic disorder. This means that in the UK, 30,000 babies and children are newly diagnosed each year and more than 2.4 million children and adults are living with a genetic disorder. Our mission is to be the leading source of information and support for both those affected by a genetic disorder, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared. Visit website >

Turn2Us

Turn2us help people in financial need gain access to welfare benefits, charitable grants and other financial help – online, by phone and face...

See more

Turn2Us

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. Visit website >

Contact

Contact is the charity for families with disabled children. We understand that life with a disabled child brings unique challenges, and we exist...

See more

Contact

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 helpline@contact.org.uk. We’re open 9.30am to 5pm Monday to Friday and have access to interpreters. Visit website >

Love Keep Create

Have you ever wondered what to do with those old clothes in the attic? The ones that you can’t bear to give away or...

See more

Love Keep Create

Have you ever wondered what to do with those old clothes in the attic? The ones that you can’t bear to give away or sell because they’re so full of memories. They could be baby grows your child has outgrown, Granny's favourite dressing gown, Dad's favourite old shirt, your uniform from work, sports kits - all of them can be turned in to our beautiful keepsake memory bears, animals, blankets, quilts, animals and much more.  Here at LoveKeepCreate this is a situation we know well - we've turned our baby's old sleepsuits into luxury memory quilts, our old Army uniforms into keepsake bears and our beloved (now sadly departed) Grandad's old shirts into a memorial cushion. We didn’t even realise we were that sentimental until it came to putting the most worn items into a bag for charity and realising that we just couldn’t do it; there were just a few special bits that held too many memories. That is why we create beautiful keepsakes from those beloved old clothes. We can take virtually any fabric items and turn them into gorgeous keepsake blankets, quilts, cushions, teddy bears, dragons, monkeys, ducks…we have a whole keepsake animal family! Visit website >

Be Brave Bears

Be Brave Bears is a charitable organisation run by volunteers who send personalised keepsake bears to children who are terminally ill or have...

See more

Be Brave Bears

Be Brave Bears is a charitable organisation run by volunteers who send personalised keepsake bears to children who are terminally ill or have life limiting conditions. Each of our bears is sponsored by businesses, groups, or families, meaning these bears are free of charge to the children.* Once complete each bear is placed in a special keepsake bag and given to the child complete with a numbered certificate. *excluding postage and packaging Visit website >

DisabledHolidays.com

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...

See more

DisabledHolidays.com

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. Visit website >

Make-a-Wish

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...

See more

Make-a-Wish

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. Visit website >

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...

See more

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. Visit website >

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...

See more

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. Visit website >

4Louis

4Louis is a UK charity that works across the country to support anyone affected by miscarriage, or the death of a baby or...

See more

4Louis

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 give 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. Visit website >

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...

See more

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. Visit website >

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...

See more

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. Visit website >  

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...

See more

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. Visit website >

Newlife Charity

Our nurses support families, our researchers work to improve children’s health, our dedicated team campaign for a fairer deal and our volunteers and...

See more

Newlife Charity

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. Visit website >

React

React is a dynamic charity working to improve the quality of life for children with life-shortening illnesses living in financially disadvantaged households throughout...

See more

React

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. Visit website >

Family Fund

Family Fund is the UK’s largest charity providing grants for families on low income raising disabled or seriously ill children and young people...

See more

Family Fund

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. Visit website >

The Freya Foundation

The Freya Foundation aims to raise awareness for the condition called PDH, or pyruvate dehydrogenase deficiency complex. Freya’s parents had no understanding of...

See more

The Freya Foundation

The Freya Foundation aims to raise awareness for the condition called PDH, or pyruvate dehydrogenase deficiency complex. Freya’s parents had no understanding of this condition and were left to find out more information on their own. This is why they have set up The Freya Foundation. The Freya Foundation's mission is to develop and share information and advice about PDH. By working with doctors and other medical specialists we hope to find out more about PDH including the diagnosis, the different treatments and managing the condition. Visit website >

Genetic Disorders UK

Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. While...

See more

Genetic Disorders UK

Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. While individual genetic disorders are rare, it is thought that there are currently more than 6,000 diagnosed disorders and new disorders are being identified every day. It is estimated that 1 in 25 children is affected by a genetic disorder. This means that in the UK, 30,000 babies and children are newly diagnosed each year and more than 2.4 million children and adults are living with a genetic disorder. Our mission is to be the leading source of information and support for both those affected by a genetic disorder, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared. Visit website >

Turn2Us

Turn2us help people in financial need gain access to welfare benefits, charitable grants and other financial help – online, by phone and face...

See more

Turn2Us

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. Visit website >

Contact

Contact is the charity for families with disabled children. We understand that life with a disabled child brings unique challenges, and we exist...

See more

Contact

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 helpline@contact.org.uk. We’re open 9.30am to 5pm Monday to Friday and have access to interpreters. Visit website >

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...

See more

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. Visit website >

Newlife Charity

Our nurses support families, our researchers work to improve children’s health, our dedicated team campaign for a fairer deal and our volunteers and...

See more

Newlife Charity

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. Visit website >

React

React is a dynamic charity working to improve the quality of life for children with life-shortening illnesses living in financially disadvantaged households throughout...

See more

React

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. Visit website >

Family Fund

Family Fund is the UK’s largest charity providing grants for families on low income raising disabled or seriously ill children and young people...

See more

Family Fund

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. Visit website >

Love Keep Create

Have you ever wondered what to do with those old clothes in the attic? The ones that you can’t bear to give away or...

See more

Love Keep Create

Have you ever wondered what to do with those old clothes in the attic? The ones that you can’t bear to give away or sell because they’re so full of memories. They could be baby grows your child has outgrown, Granny's favourite dressing gown, Dad's favourite old shirt, your uniform from work, sports kits - all of them can be turned in to our beautiful keepsake memory bears, animals, blankets, quilts, animals and much more.  Here at LoveKeepCreate this is a situation we know well - we've turned our baby's old sleepsuits into luxury memory quilts, our old Army uniforms into keepsake bears and our beloved (now sadly departed) Grandad's old shirts into a memorial cushion. We didn’t even realise we were that sentimental until it came to putting the most worn items into a bag for charity and realising that we just couldn’t do it; there were just a few special bits that held too many memories. That is why we create beautiful keepsakes from those beloved old clothes. We can take virtually any fabric items and turn them into gorgeous keepsake blankets, quilts, cushions, teddy bears, dragons, monkeys, ducks…we have a whole keepsake animal family! Visit website >

Be Brave Bears

Be Brave Bears is a charitable organisation run by volunteers who send personalised keepsake bears to children who are terminally ill or have...

See more

Be Brave Bears

Be Brave Bears is a charitable organisation run by volunteers who send personalised keepsake bears to children who are terminally ill or have life limiting conditions. Each of our bears is sponsored by businesses, groups, or families, meaning these bears are free of charge to the children.* Once complete each bear is placed in a special keepsake bag and given to the child complete with a numbered certificate. *excluding postage and packaging Visit website >

DisabledHolidays.com

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...

See more

DisabledHolidays.com

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. Visit website >

Make-a-Wish

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...

See more

Make-a-Wish

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. Visit website >

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...

See more

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. Visit website >

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...

See more

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. Visit website >

4Louis

4Louis is a UK charity that works across the country to support anyone affected by miscarriage, or the death of a baby or...

See more

4Louis

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 give 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. Visit website >

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...

See more

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. Visit website >

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...

See more

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. Visit website >  

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