MACS CEO, Liz Bates says, “This is a fantastic milestone for MACS and all our members. We’re thrilled to welcome our 1000th family into the wider MACS family where they will be joining over 3,000 members from across the UK. We’re very proud to be reaching such a vast number of families who need us.”  

Finding support when most needed

This year, ninety families in the UK will be told their babies have a rare MACS condition: Microphthalmia (small eyes), Anophthalmia (no eyes) or Coloboma (a cleft or gap in the eye). MACS mum and long-standing member, Teresa recalls how she felt when her and her husband were given the news. “When we were given the devastating news our six-week-old son had bilateral Coloboma, they couldn’t confirm at that stage if he was totally blind or partially sighted but either way as new parents, our lives had just been turned upside down. I wanted to shut myself away.”   

Finding MACS and being able to speak to someone who understood about these conditions was a lifeline. Talking about speaking to another MACS mum on the helpline, Teresa said, “She has for many years been a constant support and very good friend. We have also attended every MACS Family Weekend and to this day are forever grateful for the support, memories and outlook each and every MACS family has given us.”  

Lifelong support from friends who understand

Another MACS mum, Vikki remembers how it felt when her and her family were told by doctors their son, Toby had no left eye, she said, “After a very traumatic birth with my first child I was lost in a world trawling the internet through pages and pages of Google’s scary images. I tried to Google ‘child with one eye’.” 

Their consultant wrote to the family and enclosed the MACS website address. Vikki remembers emailing MACS and receiving an immediate positive response. “I couldn’t believe that we were not alone and how supportive these strangers were. Toby has achieved so much and continues to do so and, at that time in a world of uncertainty, it sounded unbelievable,” says Vikki.  

There are still families of children with a MACS condition who may not have heard of the MACS charity before; to these families, Vikki says, “Join MACS. There is nothing to lose and yet everything to gain from being a part of such an amazing organisation that offers time, support and lifelong friends from people who totally get it.” 

If you are inspired by this story, you can:

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