35 year old Sarah says:
“Before I became a mum I was a vet nurse, specialising in animal ophthalmology.
“I now have an 8 yr old son and identical twin boys who are almost 4. All three of my beautiful boys also suffer with the same eye condition as me.
“I was born with cataracts and small eyes, and was referred to an ophthalmologist at just three months old when my parents realised there was something wrong.
“I was diagnosed with bilateral cataracts and small undeveloped eyes. No-one else in my family had any eye problems, so they thought my eye condition may have been caused by exposure to rubella during my mothers pregnancy.
“Over the years I had many surgeries, and at the age of 11 unfortunately I developed glaucoma, which added yet another layer of complexity to things, and required drops and more surgery.
“I fell pregnant when I was 26 and was extremely shocked to find out at my 20 week scan that my baby boy also had cataracts!!!
“The ophthalmologist confirmed what the ultrasound scans had found. He had bilateral cataracts and small eyes just like me.It was at this stage we found out that the gene defect had started with me for whatever reason, and that there was now a 50/50 chance of any of my children having the same eye conditions.
“It was hard to accept at first, but we got through it all. Although a shock, in a way it was kind of normal for me since I grew up the same way. I guess that made it a little easier to know that I’ve been through many of the issues that Jake was now facing.
“Since then, Jake has had about 8 or 9 operations and is doing exceptionally well. When he was five yrs old, he had intraocular lenses (artificial lenses) surgically inserted and since then he has really developed in leaps and bounds! His vision is much better then mine. Jake now wears thin glasses rather then the thick “coke bottle” glasses he wore when he was little (which I still wear).
“Accepting the 50/50 chance of this happening again, we decided to take the leap and have another baby. I fell pregnant with identical twin boys! As soon as they were born I took them to see the ophthalmologist and yet again they were both confirmed to have the cataracts and small eyes.
“The twins vision is much less then Jake’s, showing how the same condition can affect different people in various ways. One of the twins is pretty much blind in one eye,but his other eye is not too bad at all. He has had about seven operations so far.. His twin brother has quite low vision in both eyes, and is booked in for his 4th operation in a few weeks time for high intraocular pressure and glaucoma. All three boys have had tubes surgically inserted for this reason.
“The twins eyes are still too small for an IOL so at this stage they still have to wear high-powered thick glasses (which are quite difficult to get made!)
“I support research efforts to find a cure for these conditions. For all of us, and for future generations.”
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