Luciana and her parents Diego and Oriana.
“JUST SMILE, EVERYTHING WILL BE FINE. OUR FIGHT IS FOR YOU AND ALL SANFILIPPO CHILDREN IN THE WORLD. TIME IS OUR WORST ENEMY, BUT EVERY SECOND WITH YOU IS WHAT WE LOVE MOST.”
– The Jarama Family
LUCIANA “Chana” JARAMACurrent Age: 3 Home State: Lima, Peru Diagnosis Date: March 3, 2019 Sanfilippo Type: MPS IIIA Parents: Diego and Oriana
What it felt like when we learned our child has Sanfilippo Syndrome…
It was devastating. We didn’t want to believe that. But we have to.
We started to look for information on internet and every doctor in Lima. Although, nobody knows about Sanfilippo here in Peru.
That is why we are looking for help in other countries.
What our child loves the most is …
Going to the beach
How has Sanfilippo affected our child?
It has imparied her language. It makes her hyperactive.
How has Sanfilippo affected our entire family?
It’s hard. Nobody wants to believe it, but they have to accepted. All of our family wants to help Chana to find a cure.
Time is our worst enemy
The hardest part of being a Sanfilippo parent is …
The fight against time.
The biggest misconception people have about being a Sanfilippo parent is …
People don’t know about it
If we could ask just one thing from the world/people, it would be …
Why are we asking you to donate to Cure Sanfilippo Foundation?
We have to save these children.
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