Levi, his sister Logan, and parents Jason and Christi.
“A CURE WORTH FIGHTING FOR.”
– The Ormeroid Family
LEVI ORMEROIDCurrent Age: 22 Home State: Wisconsin Diagnosis Date: February 2009 Sanfilippo Type: MPS IIIC Parents: Jason and Christi Sibling: Logan
What it felt like when we learned our child has Sanfilippo Syndrome…
The day we learned of Levi’s diagnosis was the hardest thing we have ever had to deal with. I remember sitting in the room, listening to the genetics doctor tell us the results, and all I could do was cry. I could see all my hopes and dreams for my son just go dark.
It was like our heart strings were being twisted and ripped apart. Hearing the words that there is no cure or treatment for our son left us in complete fear and anger.
What our child loves the most is …
Levi is a very loving guy and has a heart of gold. He loves his family very much. You can just look into his eyes and feel the love. He is such a social guy and loves to give handshakes or his famous high fives, which most people are like WOW dude you are strong!
Levi loves watching SpongeBob and taking laps around the house! He never likes to sit still and is always on the move! He loves taking long walks around the neighborhood and riding his 3-wheeled bike too.
How has Sanfilippo affected our child?
Sanfilippo has affected Levi in so many ways! Levi used to have a voice. He is now non verbal, but very vocal in his own way! Levi has forgotten how to play with certain toys, to feed himself, and use the restroom on his own.
So much has changed in the past years, he is sometimes like a person with Alzheimers.
Levi’s best friends are his parents! He doesn’t have close friends anymore as most kids don’t understand why he is the way he is or they are afraid of getting smacked by him! He likes to show his love by giving people a big pat on the back, head, arm or wherever. We call them love taps, they sure don’t feel like love, but we know they are innocent smacks and he has no idea he is hurting people.
How has Sanfilippo affected our entire family?
Sanfilippo has affected our family in so many ways. We have tried our best to be a “normal” family and participate in “normal” family activities as much as possible, but that gets difficult at times and can be very stressful. Levi needs to have 24/7 care. His behavior is impulsive and can be very unpredictable at times. We always have to be one step ahead and be sure Levi doesn’t touch something that could hurt him or put something in his mouth that he could choke on.
Life can be very challenging at times making it difficult to keep him safe in certain environments.
We have had to make many sacrifices that have affected our other ‘typical” children and sometimes do things not always as a family to support the other child. It has been very hard emotionally for everyone. We have always managed and together we are stronger, but its exhausting in so many ways.
The hardest part of being a Sanfilippo parent is …
The knowing you will bury your son before you die yourself, which is very unsettling. No parent should ever have to plan ahead for this. We have made some good friends on this journey with other Sanfilippo families and have had to say goodbye multiple times to their children as they lay their child to rest. It’s not fair as we walk this line of fear knowing that will be our family one day.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
It’s a rare disease that is affecting families in ways you could never imagine. Please help us spread awareness so we can find a cure for the children and young adults who suffer from this devastating disease! Help us hold on to HOPE!
If we could ask just one thing from the world/people, it would be …
Share our story and tell the world about Sanfilippo Syndrome. Sanfilippo is so rare and hardly anyone knows of this disease. The more people who know it exists, the better chance of finding a treatment better yet a cure in time for Levi.
Why are we asking you to donate to Cure Sanfilippo Foundation?
We are asking you and others to donate to Cure Sanfilippo foundation because we need funds for our upcoming clinical trial that could substantially save Levi’s life! It’s very heart wrenching knowing that money is standing in the way of life or death for our son and others with this rare disease.
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