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- CURRENT AGE:
- HOME COUNTRY:
- DIAGNOSIS DATE:
- 29, May 2019
- MPS/SANFILIPPO TYPE:
- MPS III-A
- Rasmus and Katrine
- Little brother (not affected with Sanfilippo) on the way, expected January 2020
What it felt like when we learned our child has Sanfilippo Syndrome…
We were devastated and heart broken. The conflicting feeling of unimaginable loss and grief, but at the same time still having our lovely daughter right next to us. Everything changed, and nothing changed. She was still the same happy, little girl running around, playing and enjoying life, unaware of the tragedy that had just broken our lives into pieces.
We had been searching for answers for a long time, but suddenly we wished we didn’t know the answer. Will we ever be able to feel true happiness again?
The feeling of hopelessness when told by the doctors that nothing can be done and there is nothing to fight for. But we have decided to fight for our little girl anyway! We will do everything it takes to help her. We owe her that!
WHAT OUR CHILD LOVES THE MOST…
Playing with other kids. Ice cream. Swimming. And jumping her trampoline.
HOW HAS SANFILIPPO AFFECTED OUR CHILD?
Molly is almost three-years-old and still doesn’t speak. Just a few simple words. But she is fantastic at communicating in her own way. She speaks all the time (her own funny language) and she is excellent at body language.
She is not able to take care of herself and we need to watch her and run after her all the time to prevent accidents from happening.
She is very hyperactive and has difficulties concentrating.
We have many sleepless nights.
She has had many problems with her ears and airways and has already been through many surgeries.
HOW HAS SANFLIPPO AFFECTED OUR ENTIRE FAMILY?
It has been tough! We have been so frustrated and confused about what was going on. And why everything at home was so difficult for us and not for other families.
But after the diagnosis, we suddenly have the answer to everything. There is a reason for everything and an explanation of Molly’s behavior and all her health problems.
We have moved closer together in the family. Taking care of each other and having a much higher tolerance level. Both towards each other and towards Molly.
THE HARDEST PART OF BEING A SANFILIPPO PARENT IS…
The heartbreak of knowing what Molly has to go through.
The loss of “This is just a phase. Everything gets easier in time,” as all parents say. It is just the opposite for us and that is a terrifying thought.
The constant “putting out fires” everywhere that she goes.
The constant worry for Molly’s health and safety.
The lack of sleep.
THE BIGGEST MISCONCEPTION PEOPLE HAVE ABOUT BEING A SANFILIPPO PARENT IS…
That the parents don’t want to talk about the disease.
IF WE COULD ASK JUST ONE THING FROM THE WORLD/PEOPLE, IT WOULD BE…
Please be nice and tolerant! You don’t know what others are going through. Give a helping hand instead of judging from distance.
WHY ARE WE ASKING YOU TO DONATE TO CURE SANFILIPPO FOUNDATION?
This is such an important cause. No child in the world deserves to go through what Sanfilippo kids go through.
The cure is out there somewhere and there are so many kids to be saved.
The Cure Sanfilippo Foundation is a fantastic initiative and they need all the help they can get.