Rough day today, another child lost their fight

Since Hannah was diagnosed, there have been six children who have lost their fight against neuronopathic Gaucher disease. 

On facebook this morning, I got a message from a dad that we have come to know really well, and he told me that their toddler child passed away just a few hours earlier.  This is a family that both my husband and I have really connected with.  We knew the child was in the end stages of the disease, but when he told me, I felt my heart being ripped out.  (I’m going to wait until after the funeral to give more details).  I just didn’t know what to say.

I haven’t been able to stop thinking about it all day.  I’ve talked with other family members who have lost their children to this disease, but I felt like I really developed a connection to this family moreso than the others.  We shared pictures of our kids, opened up our feelings to what this disease has done, etc. 

I keep catching myself starting to cry.  I’ve been very distracted all day.  I haven’t been able to let go of Hannah until now, when she finally fell asleep in my arms.

Then I got another reality check.  This disease is real.  This disease is ruthless.  This disease is painful.  It is killing our children.  There has to be a way to stop it.  I don’t want Hannah to be another victim of this disease.