Él es Jackson, bebé con osteogénesis imperfecta que conmueve en redes

Medios internacionales dieron a conocer la historia de Jackson Storey, el bebé que nació con osteogénesis imperfecta en Wichita, Kansas y que os doctores no sabían si sobreviviría o no.

 

 

 

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It’s Disability Pride Month! As a non-disabled parent of a child with a disability, I am constantly learning. Language, for example, matters so much. Obviously, we all know it’s inappropriate to ask “What’s wrong with so and so?” Children are going to phrase things more simply, and it’s okay to kindly correct them and educate. But adults... we know better. Let’s do better. For example, the words disabled and disability are not synonymous with bad, tragic, less than, etc., so don’t dance around them! If you don’t know the correct term to use, educate yourself and consider the literal meaning behind it. For example, instead of “wheelchair bound,” it’s appropriate to say “person who uses a wheelchair.” Wheelchairs don’t hinder or define people, they mobilize them! (The world we live in tends to be the actual hinderance for disabled people, not the disability itself.) I am grateful we have the access to tons of mobility devices for Jackson as he grows because it will give him the independence he needs be his own dude. Talk with your kids about disability so they have a foundation when they meet others who are different. Don’t assume because you know or love someone in your life with a disability that you’re exempt from doing the work of learning and growing ❤️ We all have room for improvement in the areas of understanding and loving one another well. Happy Disability Pride month! ♿️ #disabilitypridemonth #disabledandcute #osteogenesisimperfecta #rarediseaseawareness

Una publicación compartida por Abby Storey (@andsothestoreybegins) el 23 de Jul de 2020 a las 3:59 PDT

Así lo contó su madre Abby Storey para Good Morning America luego de que su bebé cumplió cuatro meses de vida.

"Solo recuerdo que sentí que si vivía o no, teníamos que estar en paz. Si necesitaba consuelo cuando salió, eso es lo que le íbamos a dar. Si necesitaba pelear, entonces pelearíamos con él", dijo Storey.

El bebé recibió el diagnóstico de la enfermedad genética que causa fragilidad en los huesos a las 28 semanas de que estuviera en el útero.

"De inmediato lo tomaron y trabajaron en él. Estaba estable y lo llevaban a la UCIN, así que mi esposo fue con ellos y se mantuvo en contacto conmigo”, contó la madre luego del nacimiento del bebé.

Al nacer, Jackson tuvo innumerables fracturas en brazos, piernas y costillas por lo que su madre pudo tomarlo una semana después.

Según su madre, Jackson sabe cómo mover su cuerpo y ellos lo toman de forma plana y ancha para no quebrar sus huesos.

"Realmente no llora con mucha frecuencia a menos que tenga una fractura, incluso con eso, su comportamiento es tranquilo y dulce", contó Storey.

Ahora Jackson es la sensación en redes sociales debido a sus fotografías donde siempre sonríe, además de que le encanta pasar tiempo con su hermana mayor, Brooklyn de 3 años.

 

 

 

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Almost 4 years ago, I started blogging. I did it for fun because I genuinely enjoyed it, was a new mom, and wanted a place to write down Brooklyn’s birth story. Things grew and I had a creative outlet with a way to bring in a small amount of income (yay!) A few years later, we got pregnant with Jackson, and I knew I’d have to address what was going on with him at some point or another. It felt easier to do it before he was born. Honestly, pretending like things were okay was awkward for me - our doctors were saying there was a good chance he wouldn’t live long after birth. I wanted the basics out there so people could pray and give us the boundaries we needed at the time. I didn’t really intend to make it a public journey in the moment, and kept things pretty quiet on here after 28 weeks. Then Jackson was born, and I just wanted to share how cute he was like I did with his sister. I think that’s a natural feeling for any parent. And hey a lot of you thought he was cute too, so here we are! Many of you have messaged me and said you’re going through something similar with your child and seeing us normalize the feeding tubes, oxygen, etc. makes you feel like you’re not alone. You’re not alone, first of all, but I know how that feels. In just 3 short months, a lot of those feelings have shifted. OI has become so normal in a lot of ways, and I forget how “different” it is to outsiders. Regardless of whether I share our lives here or not, we will still always be susceptible to ignorant comments in public. My hope is that other moms in my position would see how normal, joyful and beautiful our life is and think “Well this paints a different picture than what my doctor said.” I have learned that doctors don’t always know the answers, especially in the rare disease world. God is the ultimate physician - He gets the final say. I say this a lot and I’ll probably say it forever because perspectives need to shift: Jackson’s OI isn’t a tragedy. Is it frustrating, scary and hard? Absolutely, but so is all of life. We are embracing the hard with the good, and so grateful for the chance to do so. Thanks for being here with us. 💛

Una publicación compartida por Abby Storey (@andsothestoreybegins) el 28 de Jun de 2020 a las 11:31 PDT