National Mobility Awareness Month Partners:


John Petit

Manchester, NH

Entry Photo for John Petit - Manchester, NH

John Petit is a 19 year old young man who has endured so much in his 19 years of life. Born 27 weeks into my pregnancy at 1lb 5oz he had less than 5% chance of survival back in 1995. John spent 3 1/2 months in the NICU and several weeks in, we were informed that he had a major brain injury called periventricular leukomalacia. We were shown brain scans indicating significant brain matter was missing. We did not find out until John was a toddler how significant his disability really was. Diagnosed as severe spastic quadriplegic with cerebral palsy, he experiences several seizures each day. He is wheelchair bound and his health has progressively declined over the years. He is fed through a G/J tube, cannot walk or sit up or even assist with his own daily care. Cognitively John is between an infant and 2 years old although he weighs about 130lbs. In 2009 John contracted H1N1 virus and was read his last rights, we prepared for his passing but his strong will to live helped him beat the odds! The illness has had lasting effects on John’s health status, he now required oxygen and heart monitor at all times. John has had several other close calls since then. In November of 2013 John developed antibiotic resistant pneumonia which almost took from us again and as a result John had to tracheostomy and is now on a home ventilator. It has been two years since we have had a van. John used to enjoy state parks, shopping, watching glow bowling, all places he can no longer go without a van. The only travel he does is to doctor visits in which a transport company brings him. Mom and dad are John’s caregivers; we take care of all his needs without any outside help. Mom is disabled and my goal is to keep from ending up in a wheelchair myself. Because John’s too heavy to lift and has osteoporosis, he’s at risk for fracture and can’t leave his home without a wheelchair. We don’t know how much longer John will be with us so our goal is to give him the best life we can while he is still here. Getting a van to have the freedom to experience this life would be priceless. John is our hero, please help him gain freedom!