Help Keep Justin Safe
Donation protected
Justin’s Story
In just 5 short years, Justin Eaton has faced more health battles than most people do in a lifetime. Justin was diagnosed with infantile spasms (seizures) and hypertonia (decreased muscle tone) when he was 6 months old. As he got older, his spasms worsened, and in 2012, Justin was diagnosed with Lennox-Gastaut Syndrome (LGS).
LGS is a severe form of epilepsy. Children with LGS have frequent seizures mixed with brief seizure-free periods. Most children like Justin experience a degree of impaired intellectual functioning along with development delays. There is no cure for LGS, and normal development and complete recovery is rare.
In addition to his LGS, last year we learned that Justin has an extremely rare genetic disorder called congenital disorder of glycosylation (CDG). Although doctors believe CDG is underdiagnosed, there are currently less than 1,000 known cases of CDG worldwide. CDG causes a variety of neurological symptoms, including hypertonia, seizures, developmental delays, and varying degrees of cognitive impairment, all of which Justin experiences.
Justin has many seizures a day—some are longer and more severe than others—and although his tonic seizures are under control with medication, it is hard to count the other types he encounters. In 2013, Justin received a Vagus Nerve stimulator (VNS) implant, which is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. It is similar to a pacemaker but for the brain instead of the heart. This has helped Justin become more alert, but he continues to have seizures daily and takes five different seizure medications each day.
Justin requires 24-hour care. He can’t be left alone, and he doesn’t understand simple things like “no or “hot” and has absolutely no fear! He also hasn’t learned to speak so he can’t communicate like kids his age. Keeping Justin safe is an around-the-clock effort, but it is especially trying (and tiring!) at night. Justin does not sleep well at night, waking up anywhere from 2:30 to 4:00 each morning.
Our Goal
To keep Justin safe, especially at night, he needs a special bed. The Hannah bed from KayserBetten beds is exactly what we need for Justin. However, the bed is very expensive, and although Justin has Medicaid coverage, we were not approved for the bed. As it is now, Justin sleeps on a crib mattress on the floor. Justin is not safe waking up on his own. When he wakes, someone has to get him right away and bring him to the family room where a fence had been constructed to keep him safe from the kitchen and other living areas. Plus he loves to climb, and he’s big for his age, so we need a bed that is strong enough to support him while keeping him safe. You can learn more about the bed at http://specialneedsbeds.com/hannah.html
Please help us keep Justin safe at night! There are no words to express how thankful we are for all of the support and generosity shown toward our family across the past 5 years, and we hope you may be able to help us work toward our goal of getting the Hannah bed.
In just 5 short years, Justin Eaton has faced more health battles than most people do in a lifetime. Justin was diagnosed with infantile spasms (seizures) and hypertonia (decreased muscle tone) when he was 6 months old. As he got older, his spasms worsened, and in 2012, Justin was diagnosed with Lennox-Gastaut Syndrome (LGS).
LGS is a severe form of epilepsy. Children with LGS have frequent seizures mixed with brief seizure-free periods. Most children like Justin experience a degree of impaired intellectual functioning along with development delays. There is no cure for LGS, and normal development and complete recovery is rare.
In addition to his LGS, last year we learned that Justin has an extremely rare genetic disorder called congenital disorder of glycosylation (CDG). Although doctors believe CDG is underdiagnosed, there are currently less than 1,000 known cases of CDG worldwide. CDG causes a variety of neurological symptoms, including hypertonia, seizures, developmental delays, and varying degrees of cognitive impairment, all of which Justin experiences.
Justin has many seizures a day—some are longer and more severe than others—and although his tonic seizures are under control with medication, it is hard to count the other types he encounters. In 2013, Justin received a Vagus Nerve stimulator (VNS) implant, which is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. It is similar to a pacemaker but for the brain instead of the heart. This has helped Justin become more alert, but he continues to have seizures daily and takes five different seizure medications each day.
Justin requires 24-hour care. He can’t be left alone, and he doesn’t understand simple things like “no or “hot” and has absolutely no fear! He also hasn’t learned to speak so he can’t communicate like kids his age. Keeping Justin safe is an around-the-clock effort, but it is especially trying (and tiring!) at night. Justin does not sleep well at night, waking up anywhere from 2:30 to 4:00 each morning.
Our Goal
To keep Justin safe, especially at night, he needs a special bed. The Hannah bed from KayserBetten beds is exactly what we need for Justin. However, the bed is very expensive, and although Justin has Medicaid coverage, we were not approved for the bed. As it is now, Justin sleeps on a crib mattress on the floor. Justin is not safe waking up on his own. When he wakes, someone has to get him right away and bring him to the family room where a fence had been constructed to keep him safe from the kitchen and other living areas. Plus he loves to climb, and he’s big for his age, so we need a bed that is strong enough to support him while keeping him safe. You can learn more about the bed at http://specialneedsbeds.com/hannah.html
Please help us keep Justin safe at night! There are no words to express how thankful we are for all of the support and generosity shown toward our family across the past 5 years, and we hope you may be able to help us work toward our goal of getting the Hannah bed.
Organizer
Jennifer Quinlan Eaton
Organizer
Stafford, VA
