Click here to view our list of regional supporters

One of the things that many tell us after meeting another family with a child with one of the MACS conditions is how, for the very first time, they have found people who REALLY know what they are feeling. I know how we felt when we attended our first AGM-we felt like we had found a family. We had found people to whom we didn't have to explain, the families understood our tears, our fears and our worries. These families and their children gave us hope.

Here at MACS we know how important this is. This is one of the reasons that regional groups were formed. Many have said that meeting once a year isn't enough, regional groups mean that events can now be held at regular intervals around the country giving families the opportunity to gain support from those who know.

When you find your child has been born with one of the MACS conditions you worry about the rest of their lives. My husband and I felt alone, isolated and scared for our son Adam's future. Finding MACS meant finding others who could explain and support us through these traumas – we met others who shared in our child's success and really understood what these achievements mean.

Having regional groups means that there is now someone who lives locally who can stop the sense of isolation, who can put new families in touch with others who understand, who have experience of local hospitals and of the procedures our children may have to go through to get the help they need.

Being the sibling of a MACS child can bring its own problems. Our eldest son Daniel had to endure his baby brother being stared at, his baby brother getting lots of attention, had to cope with us attending lots of different hospitals, and sadly although we tried not for it to happen, see us sad and upset at times. It can be tough being a sibling. Regional groups mean that Daniel can now be in touch with others who share his feelings too.

And it's not just siblings who find it tough. It's very hard for our mums and dads, our brother and sisters to watch us struggle with what can be a very difficult time. Their thoughts are to help their children feel better-after all don't we feel at whatever age we want to protect out child? We have to remember that they struggle too. Regional events will mean that our extended family members can meet and talk together if they need to.

As Adam has grown (he is now 13) he has found it increasingly difficult to cope with his emotions., his sense of feeling different. Through meeting other MACS children he has been able to talk about these feelings, and his friendships have helped him become the confident, funny young man he is today.

MACS started with the conviction that parents can help each other, but so can siblings and extended family members. We know that not everyone will want support, but we are here for you if and when you do.

Please contact us.

Debby MACS Regional Supporters Coordinator This e-mail address is being protected from spambots. You need JavaScript enabled to view it

BEN HORNBY

SUPPORT FOR ADULTS WITH THE MACS CONDITIONS

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My name is Ben Hornby, I am 43, and i was born with a micropthalmic left eye.

I have perfect eyesight, albeit out of only one eye – so what!!I do wear glasses for distance but so do people with two eyes.  I drive a car, and I ride a motorbike - a 750cc Moto Guzzi.

I am married to Valerie.I am currently restoring a 1971 MGB GT

DEBBY CLARK
ESSEX

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My name is Debby Clark, and I am married to Gary. We have two sons, Daniel who is 19 and Adam who is 14. Adam was born with micropthalmia, coloboma and cataracts in his left eye. He also has a high frequency hearing loss. He has no vision in his left eye, and wears a prosthesis in it, but with his glasses he is lucky enough to have vision in his right eye.

When Adam was born we veered from elation to devastation. We noticed his eye was closed as soon as he was born, and it still hadn’t opened the next morning. When the paediatrician came round i had to prise it open for him to check it, and our world fell apart.

Finding MACS was a lifeline, not just for Gary and I but for Daniel too. Siblings of a MACS child have a lot to contend with, and their feelings are often overlooked. Being able to spend time with other MACS siblings was a great help to him. As Adam has grown he has struggled with having micropthalmia, especially on reaching his teenage years. Talking to other MACS teenagers has helped him immensely.

MACS and its families, have really “saved all our sanity” through the years. Being a regional supporter, and regional group co-ordinator has given us the chance to give something in return.

We are here for you-just send us an e-mail!

DIANA BRUCE
NORFOLK, SUFFOLK

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My name is Diana Bruce. I live near Great Yarmouth with my husband Nigel and our daughter Ella.  Ella was born in 1999 and has a Microphthalmic right eye with cataract.  We joined MACS in 2000 and are very grateful for all the support we have received.  I was a trustee for a year and have been a regional supporter for any years.

FAY SUMNER
WALES, MERSEYSIDE, CHESHIRE

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Fay lives in Prestatyn, Wales with her husband James and they have two sons Sammy and Finlay. Sammy has Microphthalmia (left eye) and bilateral coloboma of the optic nerve.

JENNY LUPTON
DEVON, DORSET

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Hi I am Jenny, I live in Exmouth, Devon. I am married to Tim and we have 3 children Sophie, Ben & Alex.
Ben was Born in 1998 with slight microphthalmia in his left eye with Peters Anomaly and Severe Microphthalmia in his right eye, which was removed at an early age being replaced by an artificial eye. As he has got older they have now told us his condition is Peters Anomaly Plus Syndrome.
I am looking forward to being a regional supporter for MACS and giving something back to the charity.


JULIE WILSON
DERBYSHIRE, SHEFFIELD, SOUTH YORKSHIRE

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My name is Julie Wilson and I am married with two children.  My daughter is called Georgia and she is 10 and my son is called Brandon (he is a MACS child - coloboma) and he is 7.  I enjoy doing voluntary work in my local community as well as being a regional supporter for MACS.  I know how difficult it was to get help/support/a sympathetic ear when my child was first diagnosed with his conditions.  We found that we were very isolated until we came to a MACS weekend a few years ago and were overwhelmed by the support and kindness of the MACS staff.  If I can help just one person then all my efforts will have been worthwhile.  Anyone within my region is more than welcome to contact me via the MACS website."

KAREN & LEE TILLEY
BRISTOL, WILTSHIRE

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We are Karen & Lee Tilley and live in Wiltshire with our 2 children, Alexander 6 and Josselin 4. Lee runs his own building business and also makes special needs toys. Karen is full-time carer to Josselin who is registered blind and has bilateral coloboma and unilateral micropthalmia, Josselin also has CHARGE syndrome and is profoundly deaf, tube fed and uses CPAP ventilation and a wheelchair - she is always smiling, is very cheeky and loves pink!

LAURA ROBERTS
HAMPSHIRE, SOMERSET

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Laura lives in Southampton with son Ben who has micropthalmia and a cyst in his right eye, in which he wears a prosthesis.

LIZA AND JON PRESTON
GREATER MANCHESTER

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We are Liza + Jon Preston. We are Greater Manchester supporters. Our son Aiden has all 3 MACS conditions but because of a detatched retina is totally blind. When Aiden was first born I didn't understand a lot of the medical terms and presumed things would improve. When Aiden was first fitted with an artifical eye I thought I'd hurt him taking it in and out, it was strange and I wished I'd known of MACS to say my concerns to. We lost lots of "eyes" in the early years in many a strange place. Luckily Aiden, now aged 10, will now keep his eyes in and is able to wash them and replace them himself. My main message is anything is possible and the children should be able to experience anything.

LOUISE EGGINS
DEVON, DORSET

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My name is Louise Eggins and I am one of the Regional Supporters for the Devon region.  I am married to David and we have two lovely girls, Laura (who is 13) has coloboma and microthalmia.  We also have Rebecca who is 11 years old.  We have been members of MACS now for quite along time.  I am also responsible for doing the MACS caravan bookings.

LYNDA RHODES
WALES, MERSEYSIDE, CHESHIRE

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Lynda lives in Holyhead, North Wales with her husband Ian and daughter Angharad and son Luke.  Angharad has Microphthalmia and a cataract in her right eye. Lynda was elected as Regional Group Secretary in May 2004 and elected Secretary in 2005.

MARIA MCMENAMIN
BEDFORDSHIRE, BUCKINGHAMSHIRE, HERTFORDSHIRE

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Hello there, I'm Maria McMenamin. I have two daughters, Dominique Burton aged 16 and Francesca Burton aged 18. We live in the small town of Hitchin in Hertfordshire. Dominique was born with her right eye missing but as there was a small remnant of tissue in her socket, it is classed as Micropthalmic. She was also born with the right side of her nose missing and a Cleft Palate. To date, she has had approximately 25 operations. When her nose and jaw stop growing, when she is about 18, she will have further complicated surgery, to reconstruct her nose and have her jaw moved forward.  Maria.

MELANIE ANDERSON-PIKE
DORSET

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My name is Mel and I'm Mum to Abigail who turns 5 in April, she was born with Bilateral Peters Anomaly (clouding on the corneas). At birth both eyes were microthalmic, however surgery and Glaucoma has caused her right to 'bulge' and it is now much larger than her left eye. Abigail has a corneal graft, is aphakic and has Glaucoma to her right eye. The left eye has an optical iridectomy (opening in the iris); she also has nystagmus, no 3D vision, depth perception or peripheral vision and is severely photophobic. Peters Anomaly also carries a risk of vitreous haemorrhage (bleeds in the eye) and detached retinas.

Abigail is a very independent and determined little girl who constantly strives to achieve, she has used a long white came to aid with her mobility and independence since she was 2 years old. We are extremely proud of our 'fesity' little girl and she has certainly made her presence known in her Reception class, since starting school in September!

We live in Poole, Dorset and are looking forward to the imminent arrival of our second child in January! Abigail's Dad, Pete also has Peters Anomaly and works locally as a Maintenance Engineer. We are currently in the process of trying to renovate our 3 bedroom Victorian maisonette; although at times, it feels like we don't seem to make much progress!

MICHELLE PATERSON
SCOTLAND NORTH

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Michelle lives in Strichen, a wee village in the North-East of Scotland, with husband John, daughter Amelia and son Jack, who has bilateral macular and disc colobomas/nystagmus.

Although living in North-East of Scotland, Michelle is available to families all over Scotland. Distance is no object!

PAULA BURTON
TYNE & WEAR

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Hi, I’m Paula, married to Simon. We have a son Luke age 11 and a daughter Sarah age 10, and we have a new baby due in May 2010.

We live In the Tyne and Wear area.  Sarah has a micropthalmic eye with coloboma, phpv and wears a prosthetic schell. She was also born with a cataract which was removed when 13 weeks old. In her ‘good’ eye she has nystagmus, astigmatism and myopia.

Writing this list of conditions sounds a lot worse than she actually seems,  She is very bright, confident little girl who loves nothing better than dancing and singing in the mirror with a hairbrush …. Like all us girls do… I mean did!!!

SARAH POTTER
CAMBRIDGE

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Hi! My name is Sarah, and I am married Mark. I am mum to Nathan, 8, who has bi-lateral anopthalmia, Louise who is 4 ½, and Hannah who is 2.

When we first got in touch with MACS it was a relief to have someone to talk to, someone who could sympathise with us, and someone who really knew and understood the day to day pressures, and the fun and games, that go with our MACS children.

Being a regional supporter gives me the chance to give something back and to pass on the support and help we were given.

SHEILA POTTER
SUPPORT FOR GRANPARENTS

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We are Sheila & Robin and live in the beautiful City of Cambridge. Our grandson Nathan (7) has Bilateral Anopthalmia.
Robin is at the moment writing a novel (I hope to sell the film rights!!!) We both enjoy cycling, reading, gardening and holidays. Our grandchildren (4 girls and Nathan, our only grandson) are a great pleasure to us. We are very proud of Nathan's achievements, as he has added problems other than Anopthalmia. He is a real little fighter.

SUE BRISTER
NORTH, EAST, WEST YORKSHIRE

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Sue is married to Mark, and they have four children, Caitlin, Luke, Nicola and Jodie. Luke has micopthalmia in his left eye.

TERESA GORDON
LONDON

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My name is Teresa Gordon. I am married to Mel Gordon. I have an 11 year old boy called Scott, I have an 8 year old called Cole, and my baby girl called Kara. She is 21 months and has a micro right eye with a dense cataract. She has Nystagmus of the left eye and she is more of a dare devil than the boys ever was!

I am an assistant cub leader, Chairperson at my local Preschool. I now help with the London Region of MACS, and i am a full time MUM. I find working with kids very rewarding. I love seeing kids achieve what seems the impossible to them. I always love to be around people.

My husband this year has taken up the challenge of the London Marathon (2010) we are all very proud of him - all in aid of MACS.

I am very proud to be part of MACS, they supported us through probably one of the toughest times of our lives, and we now feel we have an extended family.

If you would like to take part in any of the events please talk to us.

DANIEL & LOUISE ALVAREZ
WORCESTERSHIRE, STAFFORDSHIRE, WEST MIDLAND, SHROPSHIRE

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As some of you will be aware on January the 31st 2009 Luca was born into the Alvarez family, he was born with bilateral microphthalmia meaning he is quite severely visually impaired. As you can imagine this came as a big shock as nobody in our families had even heard of it and nobody we know had ever had it. Thanks to MACS we where able to find other families with children in similar situation along with practical help and advice.

ALISON ATKINSON
LEICESTERSHIRE, NORTHANTS, WARWICKSHIRE

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Hi my name is Alison and I live in Leicestershire. I am married to Justin and we have 2 children:- our son Joel aged 6,who has bilateral coloboma and also peters anolomy, and our daughter Sydney aged 4. We joined MACS earlier in the year and attended this years 2010 AGM (when I became a regional supporter). We all wish we had joined sooner. I am really looking forward to supporting, and meeting, other families.

JANE REYNOLDS
LEICESTERSHIRE, NOTTINGHAM

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Hi I'm Jane. I live in North Leicestershire. I am married to Richard and we have 3 Children Alfred, Henry and Scarlett.
Scarlett was born in 2007 with Microphthalmia and a Coloboma in her right eye. She is a very happy little girl and you would never guess that she can only really see out of one eye. It certainly doesn't stop her from keeping up with her brothers.
As Scarlett is only young we are still going through tests and trying different things. MACS has been a great help through contacts on the website and going to the Macs weekend. We have been encouraged in talking to other Macs children and parents about any concerns we have.

BELINDA DAY
LANCASHIRE

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Hiya my name is Belinda. I am married to Warren and we have 3 girls aged 21 years 19years and 3 years. Hannah, our first child, was born with microthalmia and peters anomoly. Hannah is registered blind and now lives in her own flat, leading very much an independant life, we are really happy to say. When she was a baby it would have been wonderful to have looked into a crystal ball because you worry so much for their future. A lot of water has passed under the bridge, along with a lot of tears over the years. I am here to help and offer my support or simply listen. I look forward to hearing from anyone in my area who needs my help. Regards Belinda & Warren Day.

GILLIAN GARDINER
IRELAND

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My name is Gillian Gardiner and I live just outside Ballina in Co.Mayo, Ireland with my husband Anthony and our four children Chloe (11), Clara (9), Jemma (8) and Cian (3) who was born with bilateral anophthalmia.

SUZANNE HILEY
HAMPSHIRE, BERKSHIRE, SURREY

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Hello my name is Suzanne and I live in Hampshire. I have two daughters, Sarah and Jessica. Jessica was born with Microthalmia of the left eye and wears a prostheses shell.

ANDREA MACHIN
CHESHIRE

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Hi my name is Andrea Machin and I am full time mum/carer to a gorgeous little girl who is 6 and has Congenital cataracts, micropthalmia, cerebral palsy, microcephly and global developmental delay. Whilst she is in school I am also parent rep for the Aiming High for Disabled Children programme, and Trustee for a local Disabled Children’s charity. I have gained a wealth of experience since having Isabel and working with other families of disabled children and would like to use this opportunity to help others.

HANNAH MARSHALL
SUPPORT FOR ADULTS

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I am 25 years old and live in Nantwich, Cheshire on a narrowboat with my husband Andy and our dog (Shih Tzu) Poppy. I love music and am a singer in a band, we do country, rock, indie and folk music - they are teaching me how to play the guitar. I have micropthalmia in my right eye and this also has a cataract, I have worn a prosthetic shell since 6 weeks old; all my eyes are made by Robin Brammer. I am a Sales & Marketing Manager for the UKs fastest growing logistics provider. I love animals and am hoping to do a course in dog grooming next year.

MARK & AMANDA STEVENS
SOUTH WALES

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Mark & Amanda Stevens live in Monmouth and run a Picture Framing business. They have 2 daughters, their eldest Rachel is 19 years old and their youngest, Sophie is now 16 years old and is hoping to go to RNC Hereford for the Visually Impaired and Blind in September 2010. Sophie was born with bilateral Coloboma with extensive damage to both retinas. Originally Mark and Amanda were told that Sophie would only react to light, sight 2/60 kays and Sophie was registered blind. However, Sophie is a miracle and has done so much more than expected and continues to surprise us. Sophie is very interested in singing, dancing and acting. She has taken part in Gymnastics, and has helped her sister, Rachel to run dance classes for children, Sophie has been able to achieve Grade 4 in both Piano and Cello by memory as she cannot read music. Sophie is a very young 16 year old and still remains a big kid at heart who loves interacting with people of all ages.

STEPH WAUGH
HUMBERSIDE, LINCOLNSHIRE

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I am Stephanie Waugh, married to Gavin. We have 2 boys Lewis aged 10 and Benjamin aged 5 and we live in Hull, East Yorkshire.

Ben was born in 2005 with anopthalmia and severe micropthalmia and he is registered blind. Benjamin is a happy boy who loves music, his toys, being outside, swimming and going for a ride in the car. Ben cannot talk yet however he can easily make his feelings known!! He was diagnosed with a syndrome known as Goldenhar a couple of years ago.

MACS has been a godsend to my family and I and if I can help anyone in my region I will be really pleased to do so .

 

TINA MCKINSTRY
LANCASHIRE

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My name is Tina Mckinstry, I am married to Andrew, have 2 children Daniel (right) age 12, and Matthew age 10 (on the left). We live in Wigan, Lancashire.

Daniel was born with Microphthalmia and coloboma He had 6% vision in his right eye but is blind in the left but he does everything my other son Matthew does. Daniel has never let it stop him doing anything. He also got juvenile arthritis 2 years ago and spent 3 week, in hospital which was very hard because he could not walk or move any part of his body as he was in that much pain.

When Daniel was born we got a lot of information and support from MACS. We would have been lost without them and I am looking to help anyone who needs help as there is nothing worse than feeling alone when you are going through this.

 


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