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- CURRENT AGE:
- Petrozavodsk, Russia
- DIAGNOSIS DATE:
- 11, July 2019
- MPS/SANFILIPPO TYPE:
- MPS III-A
- Olga and Andrey
What it felt like when we learned our child has Sanfilippo Syndrome…
It felt like our entire world fell down. The fear of losing the only child in our family overwhelms us, and we are still trying to cope with the fear.
WHAT OUR CHILD LOVES THE MOST…
Delicious meals, puzzles, waving in a swing and driving in a car.
HOW HAS SANFILIPPO AFFECTED OUR CHILD?
Misha does not speak and does not properly understand the speech of other people. He has sleep dysfunction, myopia, coxa vara, and liver enlargement.
HOW HAS SANFLIPPO AFFECTED OUR ENTIRE FAMILY?
The whole family has united to save Misha and lives in hope for a clinical trial.
THE HARDEST PART OF BEING A SANFILIPPO PARENT IS…
To see your child becoming more and more different from his peers, losing his skills, and experiencing difficulties in the simplest activities.
THE BIGGEST MISCONCEPTION PEOPLE HAVE ABOUT BEING A SANFILIPPO PARENT IS…
Most people in our surrounding in Russia have not even heard of Sanfilippo, it is so rare.
IF WE COULD ASK JUST ONE THING FROM THE WORLD/PEOPLE, IT WOULD BE…
To save our son.
WHY ARE WE ASKING YOU TO DONATE TO CURE SANFILIPPO FOUNDATION?
We believe that each child diagnosed with a disease has a right for the cure, and there should be cure for every disease.