We spent nine months fighting for a diagnosis, and I thought that it was a lifetime. I look back and wonder what we could have done differently so that Claire could get that time back.
For other families, it takes even longer, and during that time regression comes to fast and they don’t even get a chance for treatment.
This is the story of a family, who live 30 minutes from me who didn’t get the chance to fight. What this disease does to our kids, so quickly is not just fair. Please read their story, share, you never know what family is going through something like this and didn’t realize the questions to ask the doctors, didn’t know to push back and often.
This mom’s friendship has become a huge support in my life, she is someone who messages back in less then five minutes anytime of day, who gets how hard this life is. We met once and became instant friends and I’m so grateful she lives so close by, so we make those visits often.
Crazy how this life is, it’s brought so much heartache but so many wonderful people into it.