Fox 5 Morning News and… me?!

I got a call this morning from Fox 5 Las Vegas.   They want me to come in tomorrow morning for an in-studio interview!

Of course, I was half-awake when she was giving me the information, but all I know is that we have to be there at 7 am for an 8:45 am taping.    Not sure if it is live or to be pre-recorded.  I do believe it has to do with the big school event tomorrow.

I have to thank my friend, Jen, for this one.  She contacted a friend of hers who used to work there and got the ball rolling.  I talked to their assignment desk manager yesterday and shared the information, but I wasn’t sure if it would go anywhere beyond that.  It did!

Unfortunately Hannah still has the stomach bug, likely a virus, and has not been herself today.  I’m hoping that she is well enough to go tomorrow.  After all, this is because of her and her beautiful smile!

I am so thrilled to get the opportunity to share why World Rare Disease Day is so important to our family.   We get a chance to share Hannah’s story in hopes that the public realizes that she deserves as much chance for a treatment or cure as any other child fighting a common disease.   In the rare disease community, hope is so much harder to have because there is very little “on the horizon,”  particularly with neuronopathic Gaucher’s disease.

Ethan and Abby are excited to be able to go to the news station in the morning.  They will be missing a couple of hours of school at the most, but I don’t want them sheltered from this either.

Later on that day – the big school beading and ribbon coloring event!   Huge, huge day tomorrow — all inspired by my amazing little girl and that gorgeous smile.

We need help to try and save her life.  Hopefully this will a huge step forward in trying to find that needle in the haystack that will keep Hannah with us longer and keep our family together.