Oliver and Liam, their parents Ben and Kim, and brothers Tucker and Tobey.
“SANFILIPPO DOESN’T HAVE TO TAKE OUR CHILDREN’S LIVES, WE CAN DO SOMETHING ABOUT IT! LET’S NOT STOP UNTIL THERE’S A CURE!”
– The Amos Family
OLIVER & LIAM AMOSCurrent Age: Oliver is 1, Liam is 8 Home State: Massachusetts Diagnosis Date: March 2018 (Oliver) and June 2018 (Liam) Sanfilippo Type: MPS IIIA Parents: Ben and Kim Siblings: Tucker and Tobey
What it felt like when we learned our child has Sanfilippo Syndrome…
Shock, complete shock. Oliver was in and out of the hospital as a baby for respiratory issues, and they decided to do genetic testing that gave us these results. We had no idea what Sanfilippo was until researching it after his genetics appointment. It made me sick reading about it, and then came denial, this can’t happen to our family!
We had some-what suspected Liam’s (8yr old) diagnosis because of Oliver’s recent diagnosis, but desperately hoped it wasn’t the case! We were waiting for the doctor’s call, and when it came and we got the news, I felt like I couldn’t breathe. Just tears, lots of tears. My husband and our 4 boys were playing happily outside on a nice day, and when he came in and saw my face, he knew, “Liam?”, “Yes.” Our world is now changed forever, our sons will never have a normal life. I cried for days, mourning the loss of their “normal” life.
But, there is a hope in our souls. God gives us strength every day. We have hope because, though our boys may have a terminal disease, God determines their future. Our perspective on life has changed, and we are learning to enjoy each and every moment with our children.
What our child loves this most is…
Oliver: Playing blocks and with rattles. He loves his time with Mommy! And also, bananas!
Liam: Coloring, he LOVES to color and he is very good at it! He loves to sing, he may not know all the words, but he has a great voice! He loves anything outdoors, especially riding his bike! We are so grateful he can ride is bike really well, because that is not the norm for a Sanfilippo child. And at the moment, he also LOVES Spider-Man!
How has Sanfilippo affected our child?
Since about preschool/kindergarten, Liam has had a cognitive delay. We noticed he was behind his peers at school, and had a hard time focusing. As years went by it got worse, and I knew it had to be something more. He is in 3rd grade, but is probably at a kindergarten level. He cannot tie his shoes, button clothes, and needs assistance with other things that require fine motor skills. He has a little hear loss in both ears, and will be getting hearing aids. His behavior can be very hard at times, and it kills us that we can’t do much about it. He does require speech at school, but we are very grateful that as of now he can talk pretty well, and is very social! Oliver is only 1 year, but has some developmental delays, and has had many respiratory issues after he was born. He has been in and out of the children’s hospital many times. Currently, he is getting stronger as grows.
How has Sanfilippo affected our entire family?
Almost every aspect of our life is different, because we have to think about how Liam will do in every situation. For instance, I cannot bring him into a store, because seeing all the “stuff” to choose from is way too overwhelming for him, and he will have a melt down. His 6 year old brother does not know yet of his diagnosis, and doesn’t always understand why his brother cannot do some of the things he’s been able to do. But mostly it has affected our perspective on life; what is truly important! Seeing our kids happy and joyful and enjoying little things means a lot more to us now.
The hardest part of being a Sanfilippo parent is …
Helplessness. The worst feeling you could ever possibly feel as a parent.
The biggest misconception people have about being a sanfilippo parent is…
That you are always “so strong”. We are not always strong, we have really hard emotional days, or days when depression can seep its way in. But with God’s strength, we get through the day. With God’s strength we can choose to have joy.
If we could ask just one thing from the world/people, it would be…
Love these kids. Spread awareness, run a fundraiser, whatever it is you can do.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Because your money will ultimately go towards a treatment for these children, and they so desperately need it! Help save our sweet babies!
Our Latest News
Liam just started 3rd grade and is enjoying school! We just celebrated Oliver’s (and his twin, Tobey) 1st birthday!