Many thanks and Updates

We appreciate each and every one of you for the various forms of support we have received the last few months. Michael and I have always prided ourselves on working for what we have, and accomplishing things as husband and wife. With that being said, I know that we couldn’t have made it through the last few months without your love, prayers, generosity and listening ears. From the bottom of our hearts, thank you.

Life “post-diagnosis” has had its ups and downs. We honestly feel as though we’ve dropped off the radar of most doctors. It’s difficult when all of the doctors we have spoken to in Iowa have either never heard of the syndrome or can only give us bits and pieces of information that we’ve already come across online ourselves.

Every day is a battle with sundowner’s being the main area of frustration for us right now.  Trying to help Bridget through those challenging moments is incredibly emotional. Through ER visits, a 911 call, and constant episodes of confusion, we are always faced with the same dilemma...no one knows how to help our little girl.

I am an information person, I need to know the facts about things. Upon hearing about Bridget’s syndrome, I searched for other Sanfilippo parents, and I found the MOST SUPPORTIVE and wonderful community that took our family right in with open arms. I also reached out to another Sanfilippo mama right here in Iowa, and she has been crucial in building my knowledge base. 

Our family has recently been blessed with an amazing case manager that has been going above and beyond for Bridget. She has opened up a new world for us (ex. Bridget’s first group respite play time this last Saturday, information about future medical equipment and supports, and even setting us up with the palliative care team through Blank Children’s Hospital). 

As far as knowledge goes, we’ve exhausted all information online. It’s time for us to actually meet face-to-face with a doctor who has actually seen this syndrome. We finally have an appointment set up at the University of Minnesota to see a doctor who has done extensive research in MPS (Bridget has MPSIIIA).  We’ll be in Minnesota for 3 days in March where Bridget will undergo observations, MRI’s, as well as a spinal tap. I was initially adamant about not doing these things, however, we agreed that after 6 years we NEED answers...or at the least, advice on how to handle the uncertain future ahead of us.

I know those 3 days are going to be incredibly emotional for everyone. We are anxious to sit down and chat with the doctor and his staff members, but we’re also going to use it as an opportunity to make memories as a family of 4. Plus, no matter what information we gather while there, we know that something wonderful has been put into motion behind the scenes for Bridget back in Iowa.

Following that visit, we will return to Iowa and wrap up our school week before flying out for the Make-A-Wish trip of Bridget’s life...Disney. Bridget has no concept or understanding of what Disney is, but she DOES know who Mickey is. It takes my breath away to know that we were granted this opportunity to make her dreams come true. We cannot thank this foundation enough, and we will be forever grateful for the lasting memories made while on our trip.

Thank you again to everyone: our family, friends, acquaintances, silent cheerleaders and prayer leaders for keeping our family on your hearts.