My 9-year-old daughter, Nathasha gets lifesaving care thanks to a California Medi-Cal waiver. She has a very rare (about 1,000 in the world) genetic condition which causes her to stop breathing when she sleeps. When she’s awake, she’s breathing. When she is asleep, she needs help to breathe. It’s a complicated medical condition: cchsnetwork.org
As her parents, our reality is that if Nathasha falls asleep without being connected to the right medical equipment, she will die. Every. Single. Day. I’m not complaining. As a mom, I’ve gone through the process of mourning-accepting-embracing and finally empowering.
My husband and I do well. He has his own business. I have a great career. We are both highly educated. We have great health insurance – we pay our premiums, deductibles, out of pocket costs for doctor visits, and more. We don’t take advantage of the system.
We are not poor. But we are vulnerable.
Nathasha’s condition is such that we cannot keep her alive on our own. Randy and I rely on Medi-Cal for her nursing support and medical equipment because our insurance doesn’t cover these major expenses. The cost is just too big for us – or pretty much anyone.
It’s through federally funded programs like in-home support services that she is able to live a more independent life – attend school, play with friends, go places. The help we receive through nursing support fills the gap when we feel like we can’t go on anymore. We’re up six or seven times every night answering breathing alarms. In the morning, when our nurses arrive, we debrief them on Nathasha’s medical issues during the night and then head out to begin our "normal" work routine.
Our nurses are a very important piece to Nathasha's health and well- being.
We are a real family that has real needs. If we lost the support from Medi-Cal, we would adjust. One of us will quit our job, and stay home to care for Nathasha. We will sell our home, our cars and other assets without hesitation. It's not about our lifestyle. It's about our daughter's health.