Have you met the Moon family – Bill, Christine, Ella, Jacob, and Matthew?
Hear what the past year has been like with this week’s Family Friday.
Every week, a partner-family will share an update on their lives. You’ll get a glimpse into what it’s like living with Sanfilippo Syndrome by hearing their personal perspectives and words.
The Moons live in New York. Jacob was diagnosed with Sanfilippo in 2016. We thank them for being the first Family Friday and sharing themselves with you.
What has been going on in your family and for your child in the past year? What have been hard parts? What have been bright spots?
This past year has been tough, as we imagine it’s been for everyone. Managing pandemic-related changes has been difficult. Jacob is our most easy-going, go-with-the flow kid. So while on the surface, he seems “fine,” taking away his typical social situations has been really hard. Last March, when the world seemed to shut down, Jacob was visibly annoyed at all the time he had to spend with us!
Jacob loves being in school. He loves being with his teachers, therapists, and friends. And he loves being the little Mayor of Springhurst (our elementary school). Virtual school was tough. Virtual therapies were even tougher. Suddenly, we were wearing so many different hats, and Jacob definitely preferred mom to be just mom.
Summer couldn’t come fast enough! And we were able to take a vacation to our favorite beach in Delaware for two weeks. Masked up everywhere and armed with lots of Purell, we had a semi-normal family vacation. It was refreshing to step outside and not see our usual street view! In September, we celebrated Jacob’s 11th birthday! We organized a big car parade and had an ice cream truck. It was so nice to see so many friends come out to celebrate Jakes. But just a few days later, Jacob experienced his very first seizure. It’s something we always knew would happen one day, but we were not expecting it. It was all so scary. Our family and friends really pitched in while we stayed at the hospital with Jacob for two nights.
Jacob is back in school 4 full days. That has been a really great change for him. It’s still not the same, as everyone is in masks and Jacob doesn’t get to visit with friends in the building. But his therapists get to work with him in person, and he really needs that! One of the hardest things about this year is the lack of fundraising we’ve been able to do. We were unable to have our 3rd Annual Moonball Tournament this year. Moonball is such a great way to gather our town for a family fun day and kickball tournament. We usually do a fun Karaoke Night for the adults and big lemonade stand. It is really sad not to have our community come together for these events.
Our brightest spots through all of this is always the same – our family, friends, and supporters who help us through every step of our journey. Jacob is so incredibly loved, and for that we are forever grateful!
What is your child like today, compared to when they were diagnosed?
Jacob was diagnosed right after his 7th birthday. In 4 years, Jacob has changed a lot. Jacob used to be so incredibly energetic. He was literally always on the go. He moved around at an almost frantic pace and had a destructive side. He never meant to destroy things, but if something was in his path, it was on the floor within seconds. Jacob would feel sad that he broke something and say he was sorry. And then he’d be back to running around!
Jacob has slowed down a lot. He will still take things and toss them aside, but that frantic energy is gone. Jacob’s muscles have really tightened over the past few years. We are lucky to have a very knowledgeable PT on Jacob’s school team. Jacob receives 3 PT sessions a week at school, aquatic PT on the weekends, and in the spring we hope to get him riding horses! Jacob’s teachers at school also work hard every day to keep Jacob mobile, and help us to maintain as many of his skills as possible.
Jacob used to be able to fill in so many words to songs and phrases. He uses a lot less language now. But Jacob’s facial expressions, sounds and gestures tell his words for him. We know when he is happy, sad, hungry and annoyed!