USEFUL LINKS

Below is a list of links that have helped us during our journey with Sophie.

We have spent a lot of time researching information to help us understand Sophie's illness and also how to deal with the pressures of caring for a complex special needs child. We hope that some of the links below will help other parents like they have helped us.

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A Special Child in the Family This site contains the information we searched for in vain when we were told Sophie was incurably ill. We wanted information written for parents rather than about them, information which didn't just list the problems but also suggested ways we could improve matters.

Aaron's Tracheostomy Page Aaron's Tracheostomy Page provides needed tracheostomy information in order to ease some of the anxiety related to caring for a child with a trach. A well-informed family will usually experience less anxiety.

Action for Sick Children For over 40 years Action for Sick Children have championed the cause of sick children, involving Children and Young People in the Planning and Provision of Healthcare. Find out more about them, the work they do, and how you can help their work.

Breathe On UK Breathe On UK is a charity which specifically helps families with children on long-term ventilation (LTV). It is estimated that 600 children in the UK have this condition and that this is growing at 15% per annum.

CHASE Hospice Care for Children CHASE hospice care for children exists to support families with life-limited children - that is, children or young people who are not expected to reach the age of 19 because of illnesses that are incurable. The care network that CHASE offers stretches throughout SW London, Surrey and Sussex.

Children Living with Inherited Metabolic Diseases Climb are committed to fighting metabolic diseases through research, awareness and support. We are the UK's only dedicated organisation to provide information and support on all metabolic diseases to children, adults, families, carers and professionals.

Contact a Family Contact a Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their disability or health condition. We also enable parents to get in contact with other families, both on a local and national basis. Each year we reach at least 275,000 families.

Family Fund The Family Fund gives grants for things that make life easier and more enjoyable for the disabled child and their family, such as washing machines, driving lessons, hospital visiting costs, computers and holidays.

Mito Links Mito Links aims to direct those suffering from mitochondrial disorders to those organisations both voluntary and statutory which may be able to help them.

Mito Matters A resource for people dealing with mitochondrial disease. There are several personal and professional web sites dedicated to information and support for folk involved with Mito. Whilst information here can no doubt be found elsewhere, this may be your first port of call on the Internet.

Mitochondrial Disease Action Committee Mito Action is a member organization of patients, family and friends living with or caring for individuals with mitochondrial disease. Joined together with clinicians from various hospitals they hope to improve the lives of people affected by mitochondrial disease.

Mitochondrial Medicine Center The Mitochondrial Medicine Center aims to bring together several different disciplines to attack a single biological problem; mitochondrial disease. From molecule to patient.

RMHC - Ronald McDonald House Charities RMHC - Ronald McDonald House Charities was established in the UK in 1989 as an independent, registered charity supporting families with children in hospital. RMHC provides free 'home away from home' accommodation for the families of children requiring in-patient care in hospitals and hospices across the UK.

Steps Covering the whole of the UK, Steps provides a FREE Developmental Toy and Switch Lending Library service to individual children and hospices. They also run a subscription service for organisations. They have amassed a huge stock of unique battery-operated toys, external switches, expertise in adaptation techniques and in the matching of toys and switches to the needs of the disabled child.

The American Child Photographers Charity Guild The American Child Photographers Charity Guild is a non-profit organisation of child photographers from all over the country who have come together to form a guild dedicated to children in need and their families.

The Children's Mitochondrial Disease Network The Children's Mitochondrial Disease Network is the only parental and professional based registered organization Within the UK specializing in the complexities of Mitochondrial and asssociated disorders.

The Children's Trust Tadworth The Children's Trust provides care, education and therapy to children with multiple disabilities and complex health needs. Services are available to children from across the UK and range from special education for children with profound and multiple learning disabilities to short breaks, transitional, palliative and long term care.

The Mitochondria Research Society (MRS) The Mitochondria Research Society (MRS) is a nonprofit international organization of scientists and physicians. The purpose of MRS is to find a cure for mitochondrial diseases by promoting research on basic science of mitochondria, mitochondrial pathogenesis, prevention, diagnosis and treatment through out the world.

The Muscular Dystrophy Campaign The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and related muscle diseases. More than 60,000 people in the UK are affected. There are no cures.

The Sophie Forums - An online community for parents and families of children living with a life limiting condition The Sophie Forums web site is an online community for parents and families of children living with a life limiting condition, offering support, friendship, advice and a place to share experiences.