- Current Age:
- Home State:
- Diagnosis Date:
- November 26, 2016
- MPS/Sanfilippo Type:
- MPS III-B
- Sean and Becky
What it felt like when we learned our child has Sanfilippo Syndrome…
It is impossible to put the heartache of Liv’s diagnosis into words. We went from knowing our child was mildly delayed, to receiving a terminal diagnosis in the blink of an eye. It was and will always be extremely painful.
What our child Loves the most is…
Liv enjoys being on the move. She loves swinging, sliding, and jumping. She is very affectionate towards those closest to her, often seen by her big smiles, hugs, kisses, and high fives. When she is engaging in these activities, her beautiful smile lights up the room.
How has Sanfilippo affected our child?
We see the disease affecting Liv’s ability to be happy and content as currently being the hardest part. We want our children to be happy, learning, and being able to go with the flow of daily life. When this is not happening, it’s sad and it hurts; but boy does it make us appreciate all the *wonderful* moments that much more.
How has Sanfilippo affected our entire family?
It is extremely difficult to be given a diagnosis that you would do anything to avoid. Our entire life is going down a path that is completely out of our control. Our hearts hurt tremendously for her, her brother, her grandparents, and entire family. What we can control, is giving her the BEST life possible, while raising awareness in order to cure this terrible disease.
The hardest part of being a Sanfilippo parent is …
Knowing that something terrible is happening inside your beautiful child and there is no medicine or treatment to stop it from happening. We never want to say that she has lost her abilities.
If we could tell people just one thing about Sanfilippo Syndrome, it would be…
With awareness and successful fundraising, a CURE is within reach.
If we could ask just one thing from the world/people, it would be …
It is unbelievable how our hearts heal a little, each time a caring person acknowledges our situation, shows compassion, and/or offers support in some way, big or small; it’s truly comforting. It is fundamental to families in need to have this feeling of support. Please offer support to someone in need, if you are able.
Why are we asking you to donate to Cure Sanfilippo Foundation?
These beautiful children deserve a chance at LIFE.