Cari
Cari, mother of Dylan (age 11) and Jessie. Jessie had Sanfilippo Syndrome and died at age 13.
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CPN's In the Zoom Room: What Siblings Want
Sanfilippo: The road to diagnosis
Our first child's fatal diagnosis, with a new pregnancy at same time.
Our primary care pediatrician was our biggest support.
Sanfilippo/MPS: We hoped she would live to see a cure.
The church provided emotional support for us, though my relationship with God has been affected.
Her sharp decline was hardest on her brother. He thought he had more time.
How we thought about a feeding tube or no feeding tube.
The Feeding Tube is a difficult decision. There is no right or wrong.
“We always knew we wanted her to die at home.”
How much longer is this going to take? I felt guilty for feeling I couldn’t deal with weeks of her struggle.
More Children? It was important to talk to a third party about what we were thinking.
Talking to a Third Party, “Am I crazy?”
It’s one thing to NOT know you’re a carrier, it’s another thing to know you run the risk.
Sanfilippo /MPS: The dreaded question. How many children do you have?
You can't ever be fully ready. (Sanfilippo)
No one wants to feel like they’re ‘giving up' on their child.
The continuing relationship with her providers, even after her death, has been important in my healing.
We were lucky to always be on the same page.
Once we understood what it was, we got on board pretty quickly.