FAQ about Sanfilippo Syndrome, Livia, and the Hubert Family

Hello Blog Land.  I feel very out of touch with my blog, and have a HUGE desire to jump back into writing.  It’s so therapeutic, and in a small way, I feel like I’m making a difference along with leaving a legacy for Livia.

I’ve always said that no one ever wants to be in the world of special needs.  However, being forced into an unknown community isn’t always a bad thing.  Over the last few months (my absence from this blog), our world of special needs has been nothing short of wonderful.  Livia is doing great.  She’s lost her first tooth, which was a HUGE surprise for me.  Champions Club at our church, Rockford First, opened.  This ministry is for special needs children.  If you have a moment, click on the link and check it out for your self.  School is going great for Liv.  Her teachers and aids are people who anyone would be blessed to know.  I love all the children in her class.  I’m excited to see their happy faces on the bus every morning.  I love how excited some of them get when my dogs sneak out of the house to walk Liv to the bus with me.  It’s little moments like this that I wish everyone could experience.  Every morning, as the bus drives away, I wave good-bye, but with my hand in the “I love you” sign.  Some of the children on her bus flash it back to me now.  Bless their pea-pick’n hearts.  That’s what I think to myself, usually with a big smile and maybe a few tears in my eyes. 

I’ve also met, via the web, another special needs family whom I think about almost daily.  I watch her pictures via Instagram, read her blog, and see her posts on Facebook.  We’ve never met personally, but sometimes you’re just drawn to people’s spirits.  We do have a connection, and it’s a pretty unique story.  There is another MPS family that lives in Bloomington, Il.  Not far from me, or far from where I grew up.  Their family hosts an annual MPS family gathering at a zoo in Bloomington.  The Barnett family is a beautiful example of how I want to walk this journey with Livia.  Val and Steve have two children, Steffany and Stevie.  Sadly, Steffany passed away at the young age of 15 from Sanfilippo Syndrome.  Stevie, 14, has the same condition.  The same thing Livia has.  Val has a niece (I believe that is their relation) named, Ramee.  Her daughter, Mable, has Batten’s disease.  Ramee has inspired me and has drawn me in by her spirit.  She recently posted a FAQ about Batten’s disease on her blog, Raising Redheads.  Please, visit her blog and educate your self about Batten’s and  their beautiful daughter, Mable.

This blog has inspired me to do the same thing about Sanfilippo Syndrome, Livia, and our family.  So, if you have any questions that you would like to ask me, ask away.  Nothing is off limits.  It’s so important for me to educate others about MPS, about Liv, and about our family.  Before I was in our special needs community, I would see other people with disabilities or special needs, have questions, but never knew how to ask.  So, if you have a question you would like to ask, email me at, send me a message on Facebook, or leave a comment below asking your question.  Remember, nothing is off-limits.