For Reed Havlik , a 6 - year - old son from Iowa , the exhilaration and thrill of events like Halloween are literally a matter of living and death .

He is one of fewer than 200 people worldwide withleukodystrophy , a type of incurable , inherited neurological disease that cause progressive demolition of the neuron in the central nervous arrangement . Also referred to as vanishing white thing disease , the condition can arise from a phone number of mutations in gene involve in the formation or sustainment ofmyelin sheath , the lipide - rich wrappings that surface the duration of many axon like bead on a string . The typical sick color of medulla makes the brain ’s inner , axone - dense tissue paper visually discernible from the darker outer layers compose mostly of nerve cell cell bodies , hence the categories of ‘ white affair ’ and ‘ gray matter ’ .

fit in to the National Institutes of Health’sGenetics Home Reference , the axone loss induced by some form of leukodystrophy can be exacerbate by physiologic accent from infection , modest top dog injury , and even uttermost fright .

" We have got to be really careful what we expose him to because he could be panic-stricken to decease , " Erika Havlik , Reed ’s mother , toldFox News .   " We do celebrate Halloween but only on a really minuscule musical scale . Reed is move to be Mickey Mouse this year . His schooltime shed a party which everyone dresses up for but everyone there is exceedingly helpful . ”

" They ensure that the costume are n’t too chilling , " she said . " They really do read how serious it is for him . "

The University of Iowa Stead Family Children ’s Hospital , where Reed was diagnosed back in 2014,reportsthat the boy will experience a gradual release of motor control and the ability to talk , discover , and see in the come long time . He will eventually fall into a comatoseness before he go past away .

Prior to his first sojourn to the hospital at age two , Reed was a seemingly healthy and well-chosen child who had dispatch all his developmental milestones . Then , one day in November , Reed awaken up from a nap and could no longer endure any weighting on his right ramification . disquieted that he may have broken a bone , Erika and Jesse Havlik , Reed ’s father , stimulate him to a local urgent upkeep . Unable to influence what was wrong , the class was referred to the University of Iowa hospital , where experts eventually identified leukodystrophy . He has not been able to take the air since .

“ As they ( the doctors ) described it , each piece they articulate get worse and worse , ” Jesse say in a feature film article by the infirmary . “ By the remainder of the conversation , it finally hits you that he ’s go to die . ”

A full genetic analysis then narrowed the diagnosing down to one of the 23 - odd types of leukodystrophy currently recognise to science .

“ Reed ’s diagnosis has teach us to appreciate the moment , to be a household … and make certain we spend as much time together as we can , because we do n’t acknowledge what tomorrow is go to bring with this disease , ” Erika total . “ We just have to keep Reed glad and move forward , getting the help he involve and the therapies he need so he can live as normal as he can for as long as he can . ”

Currently , Reed is in a wheelchair after his consideration deteriorated quickly when he came down with the flu last year . Despite the grim prognosis , she and Jesse stay on affirmative , bringing Reed on as many dangerous undertaking as possible and working to lift moneyto help further researchinto leukodystrophy intervention .

[ H / T : Livescience ]