Emily’s story

Emily was born on the 19th July 2014, everything was well and I was enjoying my new baby. The next day the Junior Doctors completed their routine check on Emily's eyes and they believed something was wrong. I waited what seemed like hours for the Doctors to come back, they confirmed that there was no red reflex. I asked 101 questions and they were unable to answer any of them. I was told that I would get an Ophthalmology appointment within the next few weeks.

We received an appointment at our local hospital – four weeks after Emily was born. The appointment date came around and Emily was diagnosed with Microphthalmia of the left eye (small and underdeveloped eye) with a Cataract. The Doctor was negative about many things so we asked for a second opinion (not looking for an alternative diagnosis, but to find out more about the possible outcomes if we chose to remove the cataract).

Two weeks later we were at Great Ormond Street Hospital -  the Doctor was so positive about Emily's development, and further tests showed that an operation may give her some sight in that eye. A week later, she had her cataract removed at 7 weeks old. This involved removing the rear lens from her eye.

It was during this time that I came across the charity MACS. I was a bit apprehensive about contacting them, as it seemed like more confirmation that my baby had something wrong. I was coming back from a routine appointment at GOSH, when MACS contacted me and we had a chat. I joined their Facebook group and found the support invaluable from other families, to vent, rage and ask questions about post operation, medication, medical terms, and the what if’s. If it wasn’t for MACS I would have been scared, probably depressed and feeling very isolated.  

Since having her cataract removed Emily has been on and off of eye drops due to increased eye pressure, which is now Secondary Glaucoma. In February 2017 she had a laser operation to help reduce the pressure and we are still waiting for the eye pressure to go down. Emily also has to wear an eye patch throughout the day to help strengthen her Micro eye, she has very limited peripheral vision and sight in her left eye which makes patching extremely hard – this is a battle I'm still yet to win with her!

In April 2015, we went to a MACS family weekend. I wasn’t to sure what to expect. Emily was one of the youngest at the event but there was something for everyone to do. My son still talks about it now and the friends he made. It was emotional and reassuring to meet other children like Emily and their amazing families, every one of them with their own stories. Since the family weekend I have stayed in touch with some families. We have since been to the 2017 family weekend and a trip to a farm where we have made even more friends though MACS.

Nobody in the family has any eye condition, we have been told that her Micro eye is probably due to a mutant gene and is just one of those things that can happen. Regardless of Emily's eye condition she is such a happy child, with such a strong personality so I know that I don’t have to worry about her succeeding in whatever she chooses to do when she’s older – it is also good to know that there is a charity which will help her to overcome any hurdles she may face.

Elijah’s story

Our son Elijah was born with bilateral choroid coloboma which means that he is blind in his left eye. He was also diagnosed, at the age of 7, with Asperger's Syndrome. For many years, Elijah would only show me, his Mum, any affection and would not even put his arms around his Dad. At the age of 10, we considered Dad and Elijah attending the adventure weekend that MACS was funding and eventually made quite a nervous decision  for them to attend.

The weekend arrived and off they went. Before they had even arrived at the destination, Dad had called to say that Elijah was crying – he missed Mum! But on they travelled, leaving a sad Mum at the end of the phone!

Well, what a life changer that weekend was! They both challenged themselves and supported each other while undertaking activities they had never done before. Elijah and his Dad canoed, climbed and zip wired their way to a completely different and much improved relationship! Gradually, over the coming weeks and months, Elijah would slip his arm around his Dad’s neck- having never shown him any affection. They now have a close relationship which continues to slowly blossom and would not have happened without the MACS Adventure weekend!

Elijah is growing into a confident, affectionate young man who believes that anything is possible which is greatly attributable to MACS!! The support and love that we, as a family, have received from MACS over the years has been phenomenal.