A punch in the gut

Yesterday was a really difficult day. I got the news that Rachel Ferguson, 9, with MPSIII A passed away peacefully in her sleep. 9 years old! This hit me like a TON of bricks. I'm part of a MPS group on facebook, so there were a lot of people giving this family words of encouragement and expressing their sadness for their loss. I saw a post from another mother who lost her 7 year old. 7?!? It's not like I've not known of other children passing from this, but for some reason it was different yesterday. I think, because we haven't had "bad news" in awhile, I was living our "normal" and things were good. I think part of our "normal" is living in a bit of denial about Sanfilippo. Not that I completely deny that Livia has this, just that I put it away and LIV day to day. Enjoying each moment. Yesterday, seeing this young girls beautiful face all over facebook and knowing how young she was, threw reality right back into my face. It was a punch in the gut that left me very frightened and aware. Aware of the fact that I really don't know how long we will get to Liv with Liv. How can I prepare for this? Does anyone know? Is this even possible? I can rely on my faith and give an eternal perspective, but it still doesn't make that worldly hurt go away. It's really just not fair. To be completely honest, I've been thinking about Livia's next birthday. She will be 5 in February. Most of the material or facts on MPS say that life expectancy for children with this disorder is 10-20 years. This next birthday will mark half way to what could be her life expectancy. What parent is suppose to even think about something like this? It's horrible and it's something that goes through my mind. Now I know, and many people are thinking this, no one knows how long we have. But reality is, I have a glimpse of Livia's future and I can't ignore it.

My heart and prayers go out to the Ferguson family. I'm so sorry for your loss of your beautiful daughter, Rachel. I pray that you find comfort and peace in this difficult time. Rachel was and is now an angel LIVing in peace for eternity.

Rachel Ferguson