Living with a special kid

Hello, I’m Virginia, I have a little girl, Violeta, (3 years) with HPE semilobar and we live in Buenos Aires. She’s a cutie and she doesn’t have health issues (touch wood). Of course she has delays. I write a blog about living with a special kid (it’s in spanish:

3 Comments on “Living with a special kid”

  1. I would like to know more about the gatherings of HPE I live in a small town and there is nobody that has anything or any type of support group for us our son was born with Lobar Holoproncephally he has beat all odds and is 29 I have no one to talk to please led me in the right direction I am in Portsmouth Ohio zip 45662 Thank You.

  2. If Only
    Hello, my name is Chyanne Kern and I am writing this letter on behalf of my younger cousin Kara Pettett. Kara will be turning sweet 16 July 24th of this year. Now we all know that every sixteen year old wants a nice set of wheels to drive all over in, however for Kara this is not the case. Meet my cousin Kara through my words!
    Hi my name is Kara and yes I am turning 16 this year, can you believe it? You see I am not the average sixteen year old, God made me special! The doctors didn’t think I would live a day, let alone a year, but I proved them wrong! I was born with Holoprosencephaly or HPE for short. HPE is a disorder where the brain doesn’t divide correctly into the left and right hemispheres and I was also born with my brain on the outside of my head. This disorder has caused me to be wheelchair bound, none verbal, and suffer from many seizures daily. My disabilities may limit my day functions but there is no limit on my heart. I must get my heart from my AMAZING parents, who give me everything.
    If only there was a way to say thank you I would! My parents always put me first in their life but when it comes to transportation we always struggle. You see my parents have to take me to hospitals all the time due to my seizures, they sure are life savers. The problem is driving to Riley’s’ Hospital for doctor appointments or lifesaving events is wearing out our van. There are multiple times our van has broken down on these trips and it’s the closest hospital for my condition. If only I could say thanks mom and dad, or I love you one time, I bet my parents would be on cloud nine! Please help me surprise my mom and dad for my sweet 16 and donate a van with a wheelchair lift for me! We live in Indiana and all help is appreciated! God Bless!
    For more information please contact:
    Chyanne Kern: 270-217-7185

  3. Hola soy Gloria, tenía una hija con HPE semilobar e hidrocefalia que falleció el 20/6 por problemas respiratorios agudos, tenía 29 años dentro de todo tuvo una vida buena yo traté de brindarle lo mejor posible para que fuera feliz y ella siempre Sonreía para decirme de esa forma que lo era!!