Lexie's ONH Journey

Lexie has a defect which occurs in about 1 in every 5,000 births, Optic Nerve Hypoplasia (ONH). ONH can make the day to day tasks of reading, watching tv, and even getting from point A to point B seem out of reach, but through her determination Lexie has excelled in areas which most would have deemed impossible for her.

Here is her story (told by her mother) -

When we first noticed Lexie’s eye problem, we assumed that she was following in her sister’s footsteps and just needed glasses. We couldn't imagine there being any other problem. Her sister, Kira, received eye surgery to repair a lazy eye, but Lexie's eyes were different. The only time I noticed her eyes weren’t straight was when she was really tired.  As far as we knew, glasses were the answer.

We ended up getting her glasses when she was around 3 or 4 years old, and from my recollection, she never let them get in the way of her playing. Lexie has always been a "hard" player. She always gave it all she had when she went out to play. Unfortunately, she didn’t have much of a bridge on her nose, so her glasses kept falling down and became more of a nuisance than a help to her. Little did we know that the glasses weren’t helping her at all.

At the request of her Las Vegas eye doctor, she was placed into eye therapy classes. She was only 7 at the time, and hated them. If I knew then what I know now, I would not have made her endure that. It ended up being nothing but a waste of time and money. She was required to wear an eye patch which interfered with what little vision she had.  All she wanted to do was play, and it was a miserable time for her.

Despite it all, she continued being a normal kid. She knew that daily things came easier to others, but wanted to have a normal life. It wasn’t until she got into middle school and high school that we really started to notice that she either had REALLY bad eyes, or that something else was wrong. After some frustrations, her Optometrist was able to give us some crucial information. Lexie's eye functions were perfect.  After her examination, it was concluded that the problem was somewhere between the optic nerve and the brain. She stopped wearing glasses.

Lexie has always been into sports. I think that it is one of her great passions. She is also very good at them, being small, fit, and muscular. Her favorite is basketball, and has been ever since I can remember. In the heat of the summer or the freezing of the winter, she was always outside playing. So we signed her up for Parks and Rec basketball. She thrived and was always the star player. We could never figure out how she could excel on the basketball court, and struggle so much in the classroom. And, she was the best 3-point shooter on any team she played on. We never had an answer for that, until she got into high school and was granted help from the school district for her classes. Her guidance counselor from the district told us that Lexie was able to make her basketball shots because she "feels" where they need to go. She was feeling her way to the basket. That was hard for us to comprehend, but it was an answer and we were okay with that.

Lexie’s dream had always been to play on the high school girl’s varsity basketball team. She was definitely good enough, technically. She knew the game and was good at it, but she couldn’t keep up with the speed of the game. The varsity coach came to talk with us and told us she would never make the team. It broke our hearts because we knew that it was the one thing that Lexie wanted to do. She was shocked. Thankfully, she had always excelled in many things, and was then able to focus her efforts into those areas.

Lexie began drumming in middle school. Her sister, Kira, played drums, and that was a big influence on her decision to play. It came so natural to Lexie. She has always had great rhythm, and a keen sense for music and beat. She loved all kinds of music. There was music going on in the house every day, which I believe gave her the tools for getting her on the path she has been on for many years now.

Lexie was also a great runner. She ran both cross country and track through high school, thanks to another older sister. We had some concerns about her running cross country. We would not be able to see her on the course, and we were worried about her sense of direction and perception. But Lexie has always been a confident girl and proved to be an amazing runner. She is still a runner, drummer, and basketball player and does them in her spare time. Throw in writing songs and poetry, dancing, and taking care of her family, and that is Lexie. We have always been in awe of what she has been able to do.

As her mother, I have always believed that Lexie would see someday. I didn’t know how, but I never doubted that she would have her eyesight one day. That has probably kept me going and given me the most hope. Years ago, Lexie told her favorite aunt in a letter that she "didn’t know what it was like to see." That’s when I knew that Lexie was not only a miracle, because she was able to do so much in spite of her disability, but that she also was going to NEED a miracle.

Just knowing that there are people out there that know what she has, and can give us a name for it, is huge for us. We had been in the dark for so long. We had no idea that this was a birth defect. Even knowing that, as bad as it sounds, has been such a relief. Lexie, on her own, started diving in to finding out everything she could about her diagnosis. She is on a mission now and will not quit until she can see. She has a little family now, and wants her boys to have as normal a life as possible. She is anxious to take her children outside and let them play. She is anxious and waiting for the day when she will be able to drive. Drive and take her children to all of the lessons, classes, and games that they will be involved in. Do all of the things that she can’t do now. Lexie has been an awesome mother and wife. There's no doubt that Lexie could continue being an awesome mother and wife with the eyes she has, but it will be a happy day for many people who love her when she can see.