Another child with Sanfilippo Syndrome has gained his angel wings.  Andrew passed away early this morning.  Thanks to those of you who said a prayer for this lovely family.  The past few months have been tragic for the MPS community.  So many sweet children have lost their lives to this horrible disease.  No matter how hard we try, it is impossible for Matt and I to not think about Waverly & Oliver's future.  In fact, Waverly recently celebrated her 5 1/2 birthday and we cried over how quickly time is passing.

I am anxiously awaiting a call back from the hospital to schedule Waverly's MRI and EEG.  She had another "episode" last night".  She had a very vacant stare, stopped interacting for about 30 seconds and she was drooling (very rare).  Matt and I were both with her and it terrifies us to watch her go through these episodes.  She is also continuing to lose her verbal skills.  Just recently we realized that she hasn't said "Daddy" in weeks.  Her teacher wrote today to say that they have noticed she isn't singing her songs like she used to.  She used to sing lines from her favorite songs, with some prompting.  Now it is an occasional word and her clarity is decreasing.

Waverly has been a mommy's girl the past few days.  She is constantly climbing all over me and giving me kisses.  She gets right in my face and says "Mommy".  It is the MOST beautiful sound in the world, yet I fear I won't hear it too much longer.  This is such a cruel disease.


Jan said…
God bless you Shannon and Matt and Waverly and Oliver. I think of you and pray for you very often. God bless you.
I am crying for your pain. There are no words.

It is a very cruel disease.

There is a beauty in the way you and Matt are appreciating the time you have as sacred. Although my children do not suffer from a terminal disease, I am reminded to still hold my moments as sacred, as we don't know what tomorrow will hold.

Praying for a fast answer to Waverly's episode.
Anonymous said…
My heart is crying.
Jawn said…
Praying for you guys.
Jenkins said…
My heart just aches. They are so beautiful and those moments of sweet love are so precious.

I hope you hear something soon about the tests.

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