Bringing Support and Families together to help children born without eyes and Partially formed eyes

MACS The Micro and Anophthalmic Children’s Society was formed in 1993, by a group of parents, all of whom had children with microphthalmia (small formed eyes), anophthalmia (no eyes) and coloboma (sight problems). Until then, most of them didn’t know of any other children like their own and children with these conditions did not have the opportunity to meet each other, support each other and learn from each other.

MACS are helping to change all that

The Sunday Observer Newspaper found all the families who initially set up MACS. At the time, the newspaper was investigating the possible link between these eye conditions and commonly used pesticides. The Newspaper put the families they had found in touch with each other and MACS was formed.

At present, no single cause has been identified for the group of eye conditions that children supported by MACS are affected by. The possible link with the environment and genetic causes are both still being investigated. MACS support these research projects, by assisting the professional’s under taking the studies with volunteers from MACS and have provided valuable funding.

However, our main focus its in providing family support and a range of related services.

MACS is a Registered Charity in the UK and is run by volunteer parents with children who have the eye conditions, and by young people who are directly affected. Mutual support, from people who know what you are experiencing, either as a parent or young person, is something that we passionately believe in that is why the charity is run entirely by volunteers who understand what is needed.

MACS have family members based in the UK and are also linked to groups in Europe, Australasia and the USA. We offer support and information to parents and professionals, send out a Newsletter regularly and put families in touch with others in similar circumstances to themselves, so that they can support each other. We also provide beneficial rest for parents and children at each of our three holiday locations in Cornwall, Dorset and The Lake District. We provide equipment and other items that many MACS members need such as laptops, specialized living equipment, talking phones, speech programs, Braille printers, musical lessons and many other items too numerous to mention.

We also fund a yearly trip which lets 12 visually children with a buddy experience all the thrills of sailing for 5 days around the coast of Scotland.

Each year MACS have a family weekend in which we incorporate our AGM. 100 families attend this event and have the opportunity for families both old and new a chance to meet one another, make new friends and learn about how to cope and understand the different issues that we all come up against in day to day living. We also have specialized guest speakers who attend and provide valuable information and support.

We have come a long way since our humble beginnings back in 1993, but know that there is still a lot more to be done, if we are to achieve better understanding of the eye conditions, to fully support those affected by these conditions and for their families, and to improve opportunities for people with microphthalmia, anophthalmia, coloboma and related eye conditions. The committee is a group of dedicated volunteers who all have a MACS child and have many ideas for the future to make these aims realities.

Many people help raise funds for MACS. This includes the 200 runners who run the London marathon every year and help to provide excellent financial support. Also the Ladies who run the Flora light every year in London and Birmingham and the many events around the UK organized by MACS families, friends and organizations.

If you can support MACS and help one child you have made a big difference to their life.

Where does your donation to MACS go?

£1.00 We take over 780 calls per year from parents and children affected by a MACS condition. A donation of £1 will enable us to continue to take the next phone call to provide much needed support.

£12.00 In 2009 over 265 people attended one of the many regional events we held around the country.  A £12 donation enables a member of MACS to attend a regional event. These are so important as many families feel isolated. They give the affected child, their siblings and their parents the opportunity to meet and form friendships with others who live locally to them.

£15.00 Every year we hold a Family Weekend where families can come together and share their experiences. This is invaluable for new families who can feel alone and scared. A £15.00 donation pays for a MACS child to attend the family weekend for one day.

£40.00  A £40 donation pays for a parent of a MACS child to attend the family weekend. Families come from all over the UK and travelling with a disabled child is not only difficult but expensive too. This donation will help encourage as many families as possible to attend the family weekend.

£80.00 Mobile phones have become an essential part of everyday life. For a blind child a mobile phone can be a daunting piece of equipment. A £80.00 donation can pay for a mobile phone that has specialized speech software. Suddenly a blind teenager can feel like any other teenager.

£100.00 For a normal sighted child a ride on a bike is a very simple activity. A £100.00 donation can buy a backrest that can sit on the back of the bike. A blind child can now join in on a bike ride with the rest of the family without having to do any of the hard work!

£180.00 Having a disabled child can make travelling extremely difficult. You also need a lot of expensive specialized equipment. A £180.00 donation can help a family have a break in one of our 3 caravans around the UK for a week. They are specially adapted for blind children. It can be a rare opportunity to have a holiday and forget everyday stresses.

£250.00 Every year MACS organizes a sailing trip for MACS teenagers where they are not only passengers, but part of the crew! No parents are allowed. It is a life-changing trip. A £250.00 donation enables a MACS teenager to have this once in a lifetime experience.

£400.00 Laptops have changed the way children work in schools. A £400.00 donation pays for a Laptop, which has a specialized speech programme. Our aim is for every MACS child to have access to a Laptop with a speech programme. It opens up their world and enables them to not only keep up with their sighted friends, but the opportunity to grow.

£500.00 Sound is a lifeline to most MACS children. Most have an affinity with music and a natural talent for it. A £500.00 donation pays for singing lessons for a year. This teaches them confidence and helps them realize they can do anything they would like to do.

£2,500.00 A blind child’s window to books and reading is though Braille. A Brailler is vital for this and as with many specialized equipment it is expensive. A £2,500.00 donation will pay for a Brailler. Imagine never being able to read. A £2,500.00 Bailler is a small price to pay for this gift.

© MACS. Micro & Anophthalmic Children’s Society. Registered Charity number 1040074