Amelia's Story: Brief Lives Impact Us Forever

by Samatha Phillis

My name is Samantha Phillis. I live in Mankato, Minnesota with my husband Justin and our four children, Lydia, Nora, Rosie, and Aria. We also have two dogs. Our house is filled with a lot of loud children and activity! I have been a nurse for 12 years, and spent the last six in pediatrics, where I provide one to one care for medically complex children like my daughters. 

I want to tell you about my daughter Amelia, who died of spinal muscular atrophy type one, an extremely rare and severe genetic condition, at just three months old in 2016. People with SMA lack a protein that protects their motor neurons. As they lose neurons in their spinal cords, their brains can’t communicate with their muscles, and over time they experience progressive weakness. People like Amelia lose the ability to swallow, breathe independently, and control their heads. Tragically, the first FDA-approved medication for SMA, Spinraza, hit the market later that same year, too late for her.

The thing about spinal muscular atrophy is that you often don’t know you’re a carrier until you have a child who’s affected by it, and both parents need to be carriers. When Amelia was born, we didn’t realize anything was wrong. Very quickly, though, we noticed that instead of growing stronger and bigger, Amelia was getting weaker, not gaining weight, and having trouble breathing and swallowing. When we finally got her diagnosis, I remember a series of people entering the room and giving us worse and worse news about Amelia and her chances of survival. You just don’t expect to be talking about palliative care for an infant. 

You get told when babies are born, they just want a warm body. All they do is eat and sleep and poop and cry. But Amelia wasn’t like that. From the time she was born, it was like she was aware and alert immediately. She was this wise little soul born into a tiny little body. Because she had such a short time on this Earth, she made the best of it, and so did we. Knowing that we had so little time, we prioritized the thing that mattered. Forget about the dishes: We spent time with our firstborn daughter. 

I will never forget the horrible silence that fell over the house when we turned off her oxygen concentrator on the night she died.

I also want to tell you about Amelia’s sisters, Nora and Aria, who also have spinal muscular atrophy. They received their diagnoses during pregnancy, which helped us plan for their arrival. Nora, who is turning seven in August, likes to go against plans, though. She arrived early and she hasn’t stopped surprising us since. For example, she started talking at three years old without any speech therapy, after we’d been told that because she has a trach, she’d never be able to do that. Nora uses a bright pink wheelchair, is a huge Pokémon fan, and loves Moana. She also depends on her tracheostomy and ventilator to breathe, and uses a feeding tube. She requires 24/7 nursing care. 

Aria is a huge daddy’s girl who’s turning two in September. She loves Bluey and she is a big foodie already. She insists on tasting food even though she can’t swallow, and right now her thing is mangos. Aria uses a feeding tube for nutrition and relies on ventilation to sleep at night, so she needs a lot of experienced care.

Nora and Aria had access to lifesaving medications that they needed to start within days of being born. The goal of these medications is to slow or stop the progress of the disease. They are very expensive: Spinraza costs over $125,000 and requires a spinal tap for administration, which was grueling for Nora and our family. Evrysdi, a medication approved in 2020 that we switched Nora to and Aria now receives, costs $15,000 for a two-month supply. Medicaid is what pays for these medications and keeps my daughters alive. 

Our Medicaid waivers are so important for my daughters’ wellbeing. Minnesota has so many amazing programs for medically complex kids, disabled adults, and their families. Nora receives a Hardship Waiver which pays me nursing wages to care for her, reflecting my professional experience and skills. She also receives a waiver that pays for her day nursing, medications, medical equipment, and home modifications, and Aria accesses coverage for her medical needs through a waiver as well. Justin has a family caregiver benefit for Aria and Lydia, who has autism and had infantile spasms, a type of seizure that causes brain damage, as a child. This coverage for parental caregivers is an incredibly important resource for keeping our children home with us, and it allows us to spend more time with our kids. These paid caregiver benefits are very unusual; only a few states have programs like these, and they are transformative for our family. They allow us to work part-time and provide our children with love, care, and an excellent quality of life. 

Without these services, our children would need nursing home or hospital-level care and could not be at home with us, going to school, and participating in our community. It’s really important to me to show up for these programs and the families who benefit from them. 

Our lives changed forever because of Amelia. Our time together was brief, but she will be a part of our daily lives forever. When it comes to Medicaid cuts, home and community-based services like those we receive are always first on the chopping block. But we aren’t a line item on a budget. Our family would not be possible without Medicaid. Medicaid pays for the nursing that keeps Nora home with us. Medicaid pays for the medications that slow the progression of SMA in Nora and Aria. Paid family caregiving makes it sustainable to be caring for our children, surrounding them in love instead of strangers. It’s essential to protect access to these programs not just for our family, but for all families.