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Saga & Maia Rixer
- CURRENT AGES:
- Saga is 16 & Maia is 5
- HOME COUNTRY:
- Karlstad, Sweden
- DIAGNOSIS DATE:
- April 2015
- MPS/SANFILIPPO TYPE:
- MPS III-C
- Andreas and Lisa
What it felt like when we learned our childREn haVE Sanfilippo Syndrome…
This can’t be true. Anger, Devastation. Like I was in a plane, rushing towards the ground, waiting for the impact. Unbearable pain and fear. We have had the message delivered to us twice. For both our daughters.
WHAT OUR CHILDREN LOVE THE MOST…
Saga: Listening to music, watching musicals on TV, and being on the trampoline.
Maia: Going to the playground, jumping on the trampoline, singing and dancing to music, and being with friends and animals.
HOW HAS SANFILIPPO AFFECTED OUR CHILDREN?
Saga: Now needs assistance 24/7 with everything. She has extreme difficultly sleeping and epileptic seizures. She has no verbal communication and has difficulty walking, swallowing, and eating.
Maia: Needs someone by her side at all time to feel safe and help her out. She has loss of speech, is hyper active, and needs constant attention.
HOW HAS SANFLIPPO AFFECTED OUR ENTIRE FAMILY?
It fundamentally changed our lives and the way we thought life would be. Not only practical, normal, day-to-day things, but how we look at the world and the people in it.
We are just trying to do the best we can for our three children, every day, and accept the things we are not able to do.
THE HARDEST PART OF BEING A SANFILIPPO PARENT IS…
That there is no cure. Living with the unbearable sorrow and pain that our daughters most likely will die. Meanwhile, coping with EVERYTHING(!) on a daily basis with two children who have a constant need of attention and care. And also trying to give our son the time, love, and support that he needs from his parents.
THE BIGGEST MISCONCEPTION PEOPLE HAVE ABOUT BEING A SANFILIPPO PARENT IS…
That we are the strongest people and are able to handle anything.
IF WE COULD ASK JUST ONE THING FROM THE WORLD/PEOPLE, IT WOULD BE…
Support each other, spread awareness and love and find a cure!
WHY ARE WE ASKING YOU TO DONATE TO CURE SANFILIPPO FOUNDATION?
To hopefully one day find a cure for our children. And to support the families who are fighting and struggling on all levels every day.