Just over four years ago my wife Krissy gave birth to triplets! Sadly, within moments after all three had joined the world, one of the doctors uttered the following words to us, "Your son has no eyes." I still feel the shock from that statement to this day.
Little did we know that was just the start of Griffin's difficult journey on our little blue planet. Over the course of the next six months there were lots of tests done including three genetic tests to determine what else might be wrong with Griffin, as it became obvious there were other issues at hand. After the third genetic test, the doctors determined he had SOX2 anophthalmia syndrome. What is SOX2 anophthalmia syndrome you ask?
SOX2 anophthalmia syndrome is a rare genetic disorder characterized by abnormal development of the eyes and other parts of the body. SOX2 anophthalmia syndrome is estimated to affect 1 in 250,000 individuals. About 10% to 15% of people with anophthalmia in both eyes have SOX2 anophthalmia syndrome, like Griffin. People with SOX2 anophthalmia syndrome are usually born without eyeballs (anophthalmia), may also have seizures, although Griffin doesn't thankfully, brain abnormalities, slow growth, delayed development of motor skills (such as walking), and mild to severe learning disabilities. Some people with this condition are born with a blocked esophagus, which is often accompanied by an abnormal connection between the esophagus and the trachea. Genital abnormalities have been described in affected individuals, especially males.
Griffin, now four years old, has all of these including being partially deaf in both ears, he can't eat or drink due to the esophageal issues and survives on a liquid diet through a feeding tube in his stomach, and although he is working hard in school learning sign language and braille and using communication switches, he is still unable to communicate meaningfully with us. We feed him three times a day via his stomach feeding tube, and he is connected to a pump at night that feeds him the rest of his food in order to get enough calories to grow. He is still not able to crawl, but can roll over from back to front. He is unable to keep his head upright when in a seated position for extended periods of time, but he is getting there! He tends to "˜overheat' very easily making travel outside or in the car often difficult. I could go on and on with his other issues, trips to the hospital, and surgeries, but I want to shift to the positive aspects of Griffin's life and our plans to make it even better!
Griffin attends a special school where he gets specialized deaf-blind assistance and therapy from several fantastic teachers and therapists. My wife Krissy and I work with him at home on a daily basis trying to help him learn to crawl, sit upright, and stand, as well as more specific things like holding on to toys, learning to swallow, and trying to talk. Krissy's parents, Bev and Gary, also provide invaluable help with Griffin working with him, babysitting, picking him up from school, going to doctors appointments, and financially. We would be lost without their help. All these amazing people that help make life better for our son we have dubbed "Team Griffin."
Griffin has a long road ahead of him and struggles on a daily basis, but what stands out when you watch him is his determination and positive attitude. They permeate his personality. He has his bad days, but on the whole he is almost always smiling and laughing to the point that I am amazed and reminded not to take anything for granted. It sounds clichÃ© I know, but I really do stop and think that when I watch him. He has "˜laughing fits' where he will be laying on the floor and just start laughing hysterically for no apparent reason for minutes at a time that infects everyone within earshot! I love those.
What we are hoping to do is raise money to help expand our house to make it accessible for the Griffer (as we often call him).
We originally wanted to move and find something a little more suited to what he will need, but like so many people in recent years, we found ourselves vastly underwater on our mortgage due to plummeting housing values which made moving financially impossible, short of walking away from the house (foreclosure). So we decided to look into building on to it. Right now it is a 950 square feet bungalow style house that will soon become too small for him as he grows. He has a custom wheelchair but due to the nature of our house, he is unable to use it in our home and we are currently carrying him throughout the house. The entryways are too narrow for a wheelchair and our bathroom barely holds two adults. We won't be able to get a wheelchair through the door, let alone be in the bathroom with it and manage him into the tub and/or toilet.
We plan to tear off the entire back wall of the house and expand it outwards to add a handicap accessible bedroom complete with a lift system for when he is too big to lift, a handicapped accessible bathroom connected to his bedroom, and a larger kitchen/dining room with two exterior doors to have enough room for Griffer to join the rest of the family when we eat and to get a wheelchair in and out of the house. This will also allow Griffin to have a dedicated space for his specialized equipment as he currently shares a bedroom with his brother and sister!
We have enlisted the help of a family friend who is a builder to help reduce the cost of the rough construction. Also, my father-in-law, my brother, and I plan to do all the finish work ourselves to save as much money in labor as we can on this project. We are planning to start construction this Spring!
So that is what we are hoping to do to help make life a little easier for Griffer and also allow us to better help him. Thank you for reading and please feel free to share!
- Julia Proshkov
- Rick Owens
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