Hemskt

1-åriga pojken får hatkommentarer – nu gör mamman detta

av nuntium
11 januari, 2019

När Crystal fick sin son, PJ, var hon inte alls beredd på den funkfobi som skulle komma. Funkfobi innebär fördomar, negativa attityder och beteenden mot personer med funktionsvariationer, vilket har drabbat PJ hårt.

PJ föddes med Treacher Collins syndrom, vilket kännetecknas av omfattande missbildningar i ansiktet. Familjen får regelbundet hatkommentarer som är riktade mot den 1-åriga pojken.

Annons

– Vi får hatfulla kommentarer ofta – oförskämda, okänsliga, sårande kommentarer säger hon till Yahoo Lifestyle.

Förra månaden fick Crystal och andra föräldrar till barn med liknande tillstånd hatmeddelanden på en helt ny nivå.

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Oh heyyyy #besthair ✂️ #sofly #styledbymommy @crystalkouri_hairmakeup

A post shared by PJ aka PEEEJ! (Paul Jr) (@pjs_playhouse) on

En gruppchatt startades plötsligt på Instagram där föräldrarna lades till och tvingades att läsa döds och våldtäktshot som var riktade mot barn med funktionsvariationer.

Crystal berättar att hoten polisanmäldes direkt.

”Jag fick höra att de bara utreder om hoten är riktade mot specifika personer. Så hot mot barn i generella termer avfärdas?”, skrev hon i sociala medier efter händelsen.

”Varför tas inte hoten om att döda barn på allvar?”

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Warning ⚠️ sexual and violent content. (Full video link in bio) • • This was sent to me and many other special needs parents and children by a group of bullies • • I’ve spent days trying to process this and trying to figure out how to handle it. I have exhausted every avenue. I have called the police and filed a “tip” on FBI.gov. I have reported their accounts to Instagram, yet their accounts are still active. • • This isn’t general bullying!! Sadly, I’ve grown completely oblivious to the usual rude and hurtful comments. BUT THIS IS NOT BULLYING – ITS ON ANOTHER LEVEL. Why are threats to kill children not taken seriously? • • Yes, 99% chance that they are just internet trolls with no agenda to carry out their terrorist threats…. but it’s 1% that scares me. • • With the level of violence in today’s society, can we really afford to be dismissive? • • #choosekind #bekind #kindiscool #differentiscool #scarsarecool #treachercollinssyndrome #treachercollins #babywithtcs #facialdifference #childrenwithfacialdifferences #selfacceptance #selflove #stopbullying #specialneeds #specialneedschildren #specialneedsbully #pjsplayhouse

A post shared by PJ aka PEEEJ! (Paul Jr) (@pjs_playhouse) on

Vill förändra samhället.

Flera av kontona har tagits bort från Instagram och nu vill Crystal fortsätta fokusera på att förändra samhället till det bättre.

Crystal samlade in över en halv miljon kronor förra året för att hjälpa barn med Treacher Collins syndrom. Hon arbetar hårt med att försöka informera om olika funktionsvariationer och upplyser ofta om en diskriminering och trakasserier som många drabbas av.

– Små barn blir lätt rädda för medicinsk utrustning och människor ser olika ut, de förstår inte riktigt. Man måste förklara att det är okej att vara olika, säger Crystal till Yahoo.

– Jag känner att jag har en begränsad tid att göra vad jag måste för att bidra, jag vill att världen blir en bättre plats. Oavsett vilka skolor vi planerar att PJ ska börja i vill jag åka till så många skolor som möjligt för att informera när de är unga. Jag vill ge PJ och alla de andra en bättre omgivning.

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PJ’s 1 tomorrow!???? • #repost ???? ???? ???? Without further delay, we would like to announce the birth of our beautiful son, Paul Patrick (PJ for Paul Jr), who is SIX WEEKS OLD today!! ???? He is doing well but was born with Treacher Collins Syndrome: A very rare (1 in 50,000) genetic mutation that occurs at the time of conception. (Same syndrome as portrayed in the movie/book, “Wonder” – GREAT flick, btw!) We want to apologize for our unresponsiveness since delivery. We chose to wait to share his birth publicly because we had never heard of Treacher Collins and wanted to take the time to educate ourselves and privately process and prepare for this unexpected journey. Paul Jr (aka PJ), is still in the NICU with a long road ahead before he can come home. The major reasons for his need to remain in NICU is that Treacher Collins Syndrome (This condition does not affect the body/mind/organs – just the facial features.) causes a recessed jaw which allows his tongue to slip back into his throat creating an obstruction in his airway. The other major reason is the cleft palate. He has to be fed through a tube because he can’t suck/swallow normally yet. So, basically, PJ is very healthy and intelligent, but if a baby can’t breathe and can’t eat, he has to remain in NICU until the problem is corrected. This week he had a surgery to pull his jaw bone forward (mandibular distraction) which will also pull his tongue forward and out of his airway. As for the feeding, they will start trying to train him to suck/swallow after his two week recovery from the jaw surgery. If he can take in enough food, he can come home!!! If not, they will do another surgery to install a Gtube and he can come home until the cleft palate surgery which will happen around 1yr old. His ears and hearing are also affected and will require surgery but that will happen later. I know all of this sounds like a lot but it’s really not that bad. Although it is very traumatic to see your baby go through such difficulties, we still feel blessed that this baby chose us to be his parents! He needed a mama bear (although I’m more like a mama T-Rex ????) and a strong family support system and that’s exactly what he got!

A post shared by PJ aka PEEEJ! (Paul Jr) (@pjs_playhouse) on

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