Chris and Maggie Bourne have 3 boys, James, Andrew and Michael. Andrew their middle son was born with bilateral Anophthalmia. Maggie is another long time cyberbuddy, she is also one of the founders for the support group MACS.
They reside in the United Kingdom.
Maggie tells her story about Andrew and the start of MACS.
MACS - The Micro and Anophthalmic Childrens Society.
Discovering your child is visually impaired or blind can be a devastating experience for parents. The group aims to offer support from parents who have been through similar experiences, to link families with others who have similar problem.
MACS is a support group for families who have a child born with Anophthalmia, Microphthalmia and Coloboma.
I was eagerly awaiting the birth of my second child and planning all the things we could do. There would be four of us - an 'average family'. The night arrived and I went off to hospital. A few more hours and I would have my baby and my elder son would have a sibling and playmate. Chris (my husband) drove me to our local hospital and there after many contractions my son Andrew was born. They took him away to make sure he had all his fingers, toes etc. I was quite tired after having gone through the birth (as all Mum's know) and my little bundle of joy was brought back to us. The nurse looked at Chris and instantly he knew there was something wrong. She didn't know how to tell us 'I'm sorry but your baby has been born without eyes!!'
Even though I was groggy I can still hear those words. They will be there for the rest of my life. I can remember saying to her 'don't be stupid, how can a baby be born without eyes?' That night I eventually cried myself to sleep and thought it was all a bad dream and in the morning I would wake up and everything would be all right. I woke the next morning still a little tired and lay there for a few minutes. I suddenly sat bolt upright and looked at my baby's eyes. It wasn't a nightmare - it was true.
As our children's eye conditions are rare and hardly ever seen, the staff at the hospital put me in a room on my own and didn't know how to deal with me. After two days and having been seen by numerous doctors etc. we were to go. I went home with Chris and James in complete shock and was left to deal with this blind baby. He was perfect in every other way. He had eyelashes and cried salty tears like his brother.
The first two years of Andrew's life were spent in many hospitals, clinics and waiting rooms. We saw every specialist there was, had every test done. The final day came when we would get the result of all Andrew's tests. At last we would finally know. They couldn't give us any answers. They had none. It was an "Act of God", a "quirk of nature" was our answer. We asked if they knew of any other children like Andrew and were told 'No'. We continued to struggle and had no one to talk to who had been through the experience. I spoke to other Mums who had blind children, but it wasn't the same - the children all had eyes.
After 6 years a newspaper article was printed regarding an environmental issue that could cause babies to be born with these conditions. At the end of the article they asked for any families who had children born with these eye defects to contact them. At last I thought there are others. That sounds awful, but to think that there was somebody we could talk to, somebody who would understand. The meeting was set and around 20 families turned up. We were all stunned, we all thought that we were the only ones. At the end of the meeting it was decided that there was a need for a support group. This was how MACS started.
First off, we needed some sort of Committee. I ended up being Secretary. I had done this sort of work before having my children, so I could remember the basics. Then there was a name that had to be found. Many, many ideas later, the balloons became our logo.
We became the Micro and Anophthalmic Childrens Society in May 1993. We now needed to become a Registered Charity before we could raise any money for the new group. I rang up the Charity Commissioners and asked them for the appropriate forms. They arrived. They weren't forms - they were a "thick book"!! There were only three of us on the Committee at this stage so we had to meet. We all lived over an hour away from each other. We sat down and wrote our constitution (rules) and this was no mean task and then fill out all the answers. This then had to be typed up. The "thick book" was for guidance and help only. It took me all day to type this up and then send it off to the Charity Commissions for registration. At last I thought we have done it. Many phone calls later and alterations in our typed copy of rules we were granted Registration. Euphoria!! Now we can really get down to business.
In July of 1994 we had the launch of MACS at Battersea Park in London. We sold balloons so that they would be released into the air all at once and become our symbol. This was very spectacular as they represented the children and their families. This was also to be our first meeting. Some 20 families and their friends were there to help celebrate with us. Many exchanged addresses and telephone numbers and have become friends. It showed us that day there was a definite need for MACS. Families wanted to talk about their experiences, they wanted to tell their problems and how they got round them, they wanted to share, they wanted to belong somewhere and we were providing that.
MACS produced a leaflet about the aims of the group, explained what the conditions were and had contact numbers where we could be reached. We gave them to families who very kindly put them in hospitals, clinics and any where they thought families would see them. During this time I had written to Anne Diamond and asked her if she would consider becoming our Patron. She very kindly agreed as she understood what we were about as she had been campaigning for Cot Deaths herself. Almost 6 years from that first meeting MACS has become well known amongst some of the medical profession including health and social workers. We regularly send out a newsletter three times a year so that families can be aware of up to date information, day courses for the parents of visually impaired, respite care, holidays for the VI, help and advice on benefits that the children can receive. We encourage the families to write and use the newsletter if they want help or advice. Some have told us of their struggle and how they overcame it and children write poems.
MACS has been very lucky in securing three grants from Children in Need towards our AGM/Weekend. We do this annually at various locations and subsidise the families as much as possible so that every family that wants to come along from Friday to Monday can. These weekends have been very beneficial and we have had a speaker at each of the 4 AGM's that we have arranged. We firstly had a very talented and successful 40+ year old man who had bilateral anophthalmia. He gave us a talk about his time growing up and to present day. He gave the families positive thoughts at what the future could hold. We have also had professionals who have proved as worthwhile in their own right. We have many families who continually raise money towards MACS and are very enthusiastic. We now have a voluntary subscription which raises a few pounds. From head shaving, marathons, ½ marathons, car boot sales, coffee mornings, raffles etc., you name it and one of the families will have done it. Without them MACS would not be able to run efficiently as it does today. We are a very successful group. We have a 'Fun Day' annually and again sell balloon tickets to release all at once. Families make cakes, salt dough, MACS pens and any other form of raising funds. Some companies donate their time and equipment for use on
Each of the Committee members in their own right works very hard and endlessly for the group. I myself spend up to 5 days a week writing welcoming letters to new families, filling out data base forms for health authorities, organising committee meetings (we try and meet every 6-8 weeks) and answering the phone. MACS now has a mailing list of 220 families and 40 professionals that we send newsletters and any other information to. Many of the families are in the UK, but we have 15 families in Europe and abroad.
MACS has its own page on the Web. www.btinternet.com/~macsnet. There is a lot of information on it and have had many new families from this. We also have e mail which is: firstname.lastname@example.org. This is very popular and find it has taken over from the fax. This is a marvelous invention and families contact each other this way and children can have e mail friends instead of pen friends.
There are a few different ways to contact Maggie or Chris.
Try through theirPersonal ICQ page, or by regular e-mail.
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