Did you catch Undercover Boss last night? The one with the CEO of Mack Trucks?
We were watching it last night with the kids, and when it showed that little snippit preview of the grandfather talking about a disease where his kids are “missing an enzyme,” Daddy and I just stopped in our tracks. We both looked at each other like, “WHAT?!”
After all, Hannah’s disease is exactly that. She is missing the enzyme needed to break down fats in her body.
It turns out that this grandfather had two grandkids with MPS III (Sanfilippo syndrome), which is in the same family of diseases as Gaucher Disease. Where as Hannah is missing the enzyme to break down fat in her body, MPS III is missing the enzyme to break down mucopolysaccharides in the body.
When the grandfather said that they needed 24-hour care, my heart just started racing.
That man understood what our life with Hannah is like. Hannah also needs 24-hour care, someone always there to keep an eye on her whether she is awake or asleep. Watching your child’s life deteriorate every day, nothing you can do about it, with very little research on the horizon to provide even a treatment.
Even though it wasn’t Gaucher’s disease mentioned, the amount of national awareness for any diseases in our lysosomal storage disease family is a huge welcome.
Was it in the boss’ family or the employee’s? How totally interesting…makes the wheels spin. Carrie, have you been on shires family support website? Check it out and then call me.
It was an employee – he was the grandpa of two MPS III kids. I will have to check out their site – do you have the link?
Wow, that’s amazing.
I can’t do links from my phone(boo to the ally) but its called brave community- they are looking for someone to be the first to post about their exp with Gaucher Disease, and honestly, I can’t think of anyone better suited to it!