Arabella V.
Pennsylvania
Birth Date: December 19, 2015
Diagnosis: Holoprosencephaly
Arabella's Story
Arabella was diagnosed with Holoprosencephaly (HPE) a few days after birth. She was released from the NICU on Christmas day that year. HPE is a very rare brain malformation. We wanted to receive every bit of knowledge we could on this. We learned that only 1% of children diagnosed with HPE survive past 6 months. Arabella had her 4th birthday on December 19, 2019! She has come a long way and continues to impress doctors daily.
She had to undergo surgery to have a g-tube placed at 1 1/2 years old. She has a special diet called Real Food Blends. That is a blenderized food mix she receives from a pouch. She has 2 hearing aides and wears glasses. She attends Western Pennsylvania school for the blind because of her cortical vision impairment.
Arabella continues to smile daily, even with the amount of hurdles she must overcome. Her big sister Adelina is beyond just a big help. Adelina has made it her choice to help care for her sister by assisting with feedings and helping with sleep at night by comforting her sister. We are so very proud of both of our daughters and think they deserve the world!
"Our family can not thank you enough for all of the work and love put into this piece. It is truly beautiful and she loves it. Thank you so much again. We truly are amazed not only with this piece of work but at the hearts of complete strangers who do such amazing deeds!"
