- Current Age:
- Home State:
- Diagnosis Date:
- March 28, 2017
- MPS/Sanfilippo Type:
- MPS III-A
- JJ and Kimberly
- Alexis and Zane
What it felt like when we learned our child has Sanfilippo Syndrome…
As her father, I felt like my life as I knew it was over. As her mother, I felt like the one thing I knew, the thing I tried to pretend was not happening, to put behind me…it happened. To her big sister, it is sad, depressing, and gave her an overwhelming sense of unhappiness. To her big brother, it made him sad. He for the first time felt the real feeling of sadness. Pure sadness.
What our child loves the most is…
Zoe loves the horses, the beach, the boat, the park, Sofia the first, being in and quickly removing her bikini or “kini” as she calls it. She loves to run and run and run…
How has Sanfilippo affected our child?
Sanfilippo stole our child from us. While the disorder allowed us to, “keep our baby a baby forever”, it didn’t allow her to grow to her full potential. It hurts to hear other parents want to keep their baby a baby when we wish ours would be given the chance to grow.
How has Sanfilippo affected our entire family?
Sanfilippo robbed us of all of the things we dreamed of getting to do with our little girl. The nail salon visits we won’t have, the dates her dad wont “let” her go on, the isle he won’t walk her down, and the children we won’t watch her have. Her siblings don’t get the joy and pain of growing up with the sister they should get to share their life with. Sanfilippo stole it all from us.
The hardest part of being a Sanfilippo parent is …
Watching our child deteriorate when we should be watching her thrive. Knowing as parents we should be able to fix anything we come across and yet we can’t protect her from any of this.
The biggest misconception people have about being a Sanfilippo parent is …
Please don’t feel “sorry” for us or for her. In reality, we are not sorry about her at all. We are blessed to have gotten to keep her. Blessed to have met her, blessed to spend the time with her we do. She does not take from our life, she gives to it. She gives us meaning, she gives us happiness, she brings us all so much joy. Sure, it is sad to know her journey is going to be hard and unfair, but if came down to not ever having her or having her with Sanfilippo…..we would have her a thousand more times. So please don’t be sorry, join us in this journey.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
Join us, join us in this journey. Join us in learning more and helping not only Zoe, but all of the kids with Sanfilippo. Maybe we can’t save our Zoe in time, but with your help maybe Zoe’s journey paves the way to saving the next child born with Sanfilippo.
If we could ask just one thing from the world/people, it would be …
We can’t do this alone, she can’t do this alone. Stand behind us, help us, help Zoe on her journey.