ican Stories - Alex

On October 28th 2001, our second child, Alexander Gamino was born. Having had a perfectly smooth and healthy pregnancy we didn’t expect any complications. We were ecstatic! We now had two perfect little boys. Oh, we could only imagine the endless hours of fun our boys would spend together. But the bad news came a day after Alex’s birth when we noticed that our little Alex was still not opening one of his eyes. After having it checked by the pediatrician we were referred to a specialist. One of Alex’s eyes was tiny; the opening so small that it was hard to even get a good look inside of it and it was not reacting to light. His other eye looked normal but it was not reacting to light either. The doctor’s diagnosis: Microphthalmia (small eye) on the right and Coloboma (pupil not closing in a complete circle) on the left. But what did that really mean? As the specialist put it:  His right eye had no hope. His left eye MIGHT have peripheral vision good enough to see the big E on the vision chart, but it was too early to tell (Alex was only 2 days old) and we should follow up in three months.

The news of our baby’s condition was devastating to our family, our friends and us. The next couple of months were very difficult, to say the least. We hoped and prayed and looked for any sign that would show us that our baby’s eyes were seeing something. We filled our days with appointments seeking second opinions and trying to find a way to help our son. At his three-month appointment with the ophthalmologist, I asked what else I should be doing, how we could help our child and we even asked about the early intervention program; the ophthalmologist said it was too soon for that. Luckily we found ican’s website. I called the 800 number and they sent me a list of exams that should be done and steps that needed to be taken. And we also called the state’s early intervention program as a friend of ours had recommended.

Alex was behind in a lot of his milestones. He was six months old when he received his first therapy session. At this age he was not yet rolling over, lifting his head, much less sitting up. He did have a great smile though and he flashed it often. Thanks to his therapists’ wonderful job Alex began to roll, sit and crawl very quickly. He walked at 16 months and had us with our holding our breath all the time as he would never sit down and try to imitate his older brother’s actions.

Alex is an explorer and he has definitely gotten the concept of “practice makes perfect” as he will go in and out a door, up and down a step, on and off the carpet until he feels confident enough to run and play in the area without having to think twice about it. He keeps his older brother busy all day long, as he never gets tired of running and hopping from one end of the house to the other. Alex has grown to be a very independent and confident toddler with tons of energy. He does not let his visual impairment get in the way of anything he wants to do and as if to prove that he can get around without our help, he will sometimes throw a towel over his head and walk all around the house without a problem.

Alex never ceases to amaze all those who meet him. At the age of 2 years he had an extensive vocabulary, a full repertoire of songs (both in English and Spanish) and an incredible hunger for learning. If we didn’t challenge him enough he would come up to us and say “ask me, ask me” wanting us to ask him the colors, numbers or ABC’s. He mastered the ABC’s without a problem and now at the age of 3 he has even started saying them backwards. He falls asleep and wakes up wanting to spell words, identifying shapes and counting. He absolutely loves books and although his vision on the one eye is very weak he has started to read large print and has excellent memory. Alex is now attending a school for the visually impaired in Elmhurst, Illinois. It is hard to know if we will keep him in that type of school or if we will bring him back to his district school. I guess we will have to wait and see what the best options are for him in terms of challenge and ensuring that he is not bored.