EL PASO, Texas -- "There have been two scary days when we thought we were gonna have to say goodbye to her. Of course nobody wants to do that, but that's something we thought we were gonna have to do," said Jacob Boggs, whose daughter is fighting for her life in a Phoenix pediatric ICU.
Emma Boggs suffers from a rare and incurable neurological disorder, called surf 1. It makes her more susceptible to viruses.
She has had trouble breathing and was intubated multiple times in the past week.
Courtney Boggs his wife, hasn't left Emma's side and remains in Phoenix.
Jacob had to return home with their five year old daughter Riley.
To keep family and friends updated Boggs has created a Facebook page.
On the Emma Grace Embrace page Emma's dad talks about the struggles the family has endured and how he has put it all in the Lord's hands and the doctors attending to his daughter.
One post read, "just get out and get moving, because so many others are not able to. Excuses do not sit well with me and they do not sit well with Emma and so many others who are struggling. Start viewing things in a positive light, know that God is in your corner and you can help to begin changing the world by being a better version of you. "
If you would like to reach out to the Boggs family this is the link to the Emma Grace Embrace page: https://www.facebook.com/EmmaGraceEmbrace/
If you are interested or are seeking information about Surf1 here is a link to the official site: https://www.curesurf1.org/