A Chair Accessible Van for Geno

 
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Geno Smith is the youngest of 8 siblings. During his pregnancy, there was never any indication anything was wrong, everything was perfectly uneventful. We had no idea that was all about to change.

Geno's birth was about as bad as you can imagine. In the moments it was happening we forced ourselves to think all was well, but we knew in our heart it wasn't. He didn't cry, we couldn't hold him. In the typically loud hustle and bustle of the delivery room everyone went silent as a train of nurses started filing into the room. They formed a literal wall around his isolet, no one could see what they were doing which we found out later that was all by design. Geno's umbilical cord had wrapped around his neck three times. It took over three minutes for them to resuscitate him. He was immediately rushed off to the NICU where he stayed for the next week. Geno couldn't regulate his temperature and his breathing was very fast and shallow. He was as floppy as a rag doll. The doctors thought he had pneumonia so he was given IV rounds of antibiotics, his collarbone was broken and he had failed his newborn hearing screening. For the first few days Geno was too weak to cry, once he started to come around a little we noticed that when he cried only half of his face moved. We also saw that he couldn't blink his left eye and had trouble sucking.

Once Geno was released from the hospital the onslaught of specialist appointments began. It was the neurologist that officially diagnosed Geno with an extremely rare neurological condition called Moebius Syndrome. Geno is missing his 7th cranial nerve from the left side of his brain stem. The right side nerve is there but is very thin which allows for some movement on that side. It was around the same time that he was also diagnosed with neural hearing loss in both ears.

At about six months old we started physical, occupational, speech and feeding therapy for Geno every week. Geno had months of no "big" progress. In our family though we would celebrate every inch stone he has because we see how hard he works for things that come so easy and naturally for other kids his age.

It was around the 18 month mark that Geno was diagnosed with Cerebral Palsy. Geno does not have good use of the right side of his body. His limbs often have high tone while his core remains very weak. Geno started sitting up around 3 years old. He can crawl now and is learning how to use a spoon to feed himself his pureed food.

Our family settled into our 'new normal' routine of therapies, multiple specialists and doctors appointments, and surgeries along with the everyday routine of a large family full of homework, sports, and activities.

On Easter 2017, Geno had his first absence seizure. Just this past week he had his first tremor type seizure.

Through it all, every symptom, every struggle, every tear shed and every fear pushed aside to be hidden, our family has GROWN. Geno's diagnosis has taught our family a lot about empathy and compassion. His siblings have learned about perseverance and tolerance. They've learned how important inclusion is and how bad it feels to be left out. They are extremely protective of Geno. Our family's wish is that people can look past the wheelchair, hearing aids and sweet crooked smile. We wish they could see how happy our family is; We wish they could witness the simple yet amazing moments most families can't imagine celebrating like we do.

Our life isn't easy, that's for sure. But every crooked smile and every inch stone makes it all the more worth it.

These disorders haven't defeated us; they've transformed us. Geno may have half of his hearing, and half a smile and may be half as capable as most kids his age....but he is whole to us.

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