Hear directly from the Amos family – Parents Kim and Ben, Liam (age 13, Type A) and Oliver (age 5, Type A), and brothers Tobey (Oliver’s twin) and Tucker!
Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for research that can give children with Sanfilippo more good days.
“Family Friday” are a way families and the Foundation help spread awareness, by sharing a window into their family’s life. A window that builds understanding and visibility of life with Sanfilippo, the difficult and the uplifting, and everything in between.
This week, we are honored to share the insights and personal perspective of Liam and Oliver’s family. Liam is 13 and Oliver is 5. They were diagnosed with Sanfilippo Type A in 2018.
What is a “life with Sanfilippo” hack that you use all the time?
We keep all things very simple and “baby-proofed.” From our life in general, to how we decorate our house. We do not leave anything out on counters or tables, because Liam loves to throw everything. All pens and markers are hidden away until he is using them supervised, or else you’ll find a lovely drawing on your beige couch and walls. We keep out the soft things, so he can have fun throwing those.
What drove you to get your child/children diagnosed? And what was the diagnosis journey like?
During preschool and kindergarten years, we could not figure out what was going on with Liam, except that he had a “global developmental delay.” We could not seem to get answers.
Later, I became pregnant with twins. When they were born, one of the twins, Oliver, had breathing issues for quite a while after birth. He was on oxygen all the time and was on an NG tube in order to eat. [Note from the Foundation: “Transient tachypnea” or fast breathing after birth is a common early symptom of Sanfilippo, as well as macrocephaly/large head size and umbilical or inguinal/groin hernia.]
During one of our hospitals stays for Oliver, while he had yet another respiratory virus, they ran a bunch of tests, including genetic testing.
Eventually from this, we learned he had Sanfilippo syndrome, type A.
Knowing that each of our children had a 25% chance of having this, we had Liam tested as well. Sure enough, we got our answer.
After diagnosis, we basically went through all the grieving stages: denial, anger, bargaining with God, depression, and eventually acceptance.
God and our community were our strength during the hardest of days.
We have to actively choose life and joy every day, despite the pain and heartbreak.