What is Aicardi Syndrome?
Aicardi syndrome is an incredibly rare genetic condition. The cause is not known. Because it occurs predominantly in girls, it is believed that it is linked to an X chromosome and is the result of a genetic change very early on in development. It is believed to be a first-time genetic change and is not hereditary.
Aicardi syndrome is diagnosed through MRI and an eye exam. Most cases are diagnosed due to the three classic features which are infantile spasms, chorloretinal lacunae and agenesis of the corpus collosum.
The early stages of diagnosis are a frightening and confusing time for families. On our website you will find information and resources from families who have children with Aicardi syndrome, which we hope will offer comfort and clarity.
Information kindly collated and submitted by Dr Mary O’Driscoll, Specialist Registrar in Clinical Genetics, St Mary’s Hospital, Manchester – October 2008
Programme aimed at realising the potential of children with developemental delay, brain injury or a genetic condition.
Contact a Family – Links families with special needs and offers information on specific conditions and rare disorders.
Cerebra – Has a quarterly bulletin that offers a wealth of information and stories for parents and carers of children with neurological disorders.
Disabled Living Foundation – Source of information on daily living and disability equipment.
Council for Disabled Children – Information for parents and details of all organisations offering help with particular disabilities.
Parentline Plus – Offers support to anyone parenting a child.
Citizens Advice Bureau – Advice on all benefits, housing and your rights generally
Disability Alliance – Information and advice on benefits for all people with disabilities
The Choice Care Group – provides personalised residential support for adults with learning disabilities, mental health disorders and complex emotional and behavioural needs across 39 homes in Berkshire, Wiltshire, Hampshire and Gloucestershire.
Magazine for parents of young children with additional needs
Advice and information for disabled and mobility restricted passengers travelling through UK Airports.
How Music Therapy May Benefit Individuals With ACC or Aicardi Syndrome
Both adults and children with ACC or Aicardi Syndrome may derive numerous benefits from music therapy. Music therapy has helped numerous individuals deal with a variety of mental health issues, from aging-related conditions to substance abuse problems to trauma. It is beneficial not only for those with special needs; it aids with overall development in general. And one need not be musically talented to reap the benefits of this type of therapy. It can be helpful for anyone.
What is music therapy?
Music therapy encompasses a wide range of activities and interactions. It can involve something as simple as listening to music, or it could entail learning to play an instrument, percussion activities, or guided imagery. While actual music therapy must be done by a trained professional therapist, there are also therapeutic and mental health benefits from listening to music in one’s daily life. It is important to note that this is an evidence-based form of therapy.
Benefits of music therapy.
Music therapy has been demonstrated to aid in both mental and physical health. It can reduce blood pressure, heart rate, and muscle tension and help with pain management. Music therapy can improve memory, and help support coping skills, self-regulation, and communication with others. And it is excellent for the relief of stress and stress-related symptoms such as anxiety, restlessness, or depression. Clearly, music therapy has a lot to offer whether one has a disability, is in recovery, or simply wants to pursue improved wellness in general.
How music affects the brain.
Music stimulates and exercises the brain in a variety of ways, and this is evident in the fact that musicians often have healthier and better-developed brains than non-musicians. Music can help with functions related to memory, motor control, and spatial coordination. It can also aid in brain symmetry. Many musicians have an especially well-developed corpus callosum: this is the system of nerves connecting the two hemispheres of the brain. This is significant since in individuals with ACC or Aicardi Syndrome this segment of the brain is underdeveloped or even absent. Now, not every individual with ACC or Aicardi Syndrome benefits from or even enjoys music – but many do.
How to implement music therapy.
You may want to seek out a licensed and trained professional music therapist for yourself or your child. Or you may decide you want to access the benefits of music by learning to play an instrument, learning to compose, or working on expanding your appreciation for different musical genres.
Types of music that are most beneficial.
While classical, instrumental music can be popular in music therapy, it turns out that often rock and roll can also work well. Additionally, there is a type of music, binaural beats, which has been created and developed specifically for its therapeutic effects
Including more music in your daily life.
If you or your child are among the many who find music and music therapy beneficial for managing your condition, try out different ways of incorporating music into your everyday routine. Have playlists put together for different activities, moods, and times of day. Try learning the lyrics to your favorite songs, or even how to play them on an instrument such as piano or guitar. If you have room in your house, set up a listening station where you or your child can escape. Make sure your listening station is set up so it won’t disturb others and provide it with comfortable furniture and cushions. If you don’t have space for large, high-quality speakers, a soundbar may be a perfectly satisfactory and affordable alternative.
Music therapy may not be beneficial for everyone with your condition – or it could make a significant difference. So sample different types of therapy, and different types of music, and consider reaching out to a professional therapist. If you are living with ACC or Aicardi Syndrome, in the UK, and are in search of more information, you can contact the Corpal Helpline at +44(0)7427 429 388 or look into their membership programs.
Promotes education, good practice and research into the theory and practice of Ayres’ Sensory Integration.
AFASIC (Association for all Speech Impaired Children) – Helps children with speech and language disorders.
Enuresis Resource and Information Centre – provides advice and information to children, young adults, parents and professionals on bedwetting and soiling.
Child Growth Foundation – Information and advice for parents concerned about their child’s growth
I CAN – Advice and information for parents of children with speech and language difficulties.
National Autistic Society – Advice and information on autism, puts parents/carers in touch, provides day and residential centres for the care and education of autistic children.
NHS Direct – 24hr nurse led helpline giving health information and advice.
UNIQUE – a rare chromosome disorder support group that produces regular newsletters and genetic information.
Epilepsy Action have a helpline and regular magazines and support groups for those with epilepesy.
Association for Postnatal Support (APNI) – Telephone support for mothers with postnatal depression.
Gingerbread – Self-help association for one parent families.
Provides specialist equipment, treatment and therapies for sick and disabled children across the UK
Family Fund for Families with Severely Disabled Children – Gives cash grants to ease stress on families caring for severely disabled children under 17.
http://www.newlifecharity.co.uk
Providing equipment to help individual children, nurse support services, medical research, awareness and campaigning
Provide grants for equipment and wheelchairs
Special needs harnesses for vehicle seats, wheelchairs, shower & bath hoists, commode chairs, walking reins and more.
Good range of special needs car seats
Range of weighted and sensory products
specialisedorthoticservices.co.uk
Specialist seating including the pod seat
Lap tray for wheelchairs, buggies, car seats
Disabled clothing and wheelchair clothing
Special needs clothing including bibs, vests, swimwear etc.
Sensory Toys & Special Needs Toys
TFH – Large range of special need toys
Range of wooden toys and glitter tubes.
https://www.autotrader.co.uk/cars/electric/ev-drivers-with-disabilities
What Drivers with Disabilities Need to Know-
- The driving gap between adults with and without a disability
- Benefits of and barriers to driving an EV for someone with a disability
- How to make EVs more accessible
- Support that’s currently available for disabled EV drivers
Sure Start – Provides information on Government support for children, parents and communities.
Advisory Centre for Education (ACE) – Advice for parents on state education, special education, exclusion from school, bullying and school admission appeals
Cry-sis – support for families with excessively crying, sleepless and demanding children.
Hyperactive Children’s Support Group – Information relating to help with problems relating to hyperactivity
Aicardi Syndrome Foundation – provides information and comfort to families and friends of children diagnosed with Aicardi Syndrome.