What will happen if this child loses Medicaid?

Emma Farrington's medical bills cost $25,000 more than her parents could afford on their own.

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Emma Farrington, 5, sleeps at CHOP, after yet another seizure caused by Rett Syndrome.

Take a good look at the child in the photo that accompanies this story.

Her name is Emma Farrington, she’s 5 years old, and she has a horrible neurological disease called Rett syndrome.  She can’t speak and has the developmental abilities of a toddler. No medicine has been able to control the seizures she has suffered daily since January.

Her parents, Brian Farrington and Keli Barish, worry about her every single day. They will worry a whole lot more if Congress approves billions of dollars in Medicaid cuts proposed by President Trump this week.

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Emma Farrington with her dad, Brian and brother, Ethan.

Farrington and Barish, who live in Bucks County, have good health insurance through their jobs with the U.S. Defense Logistics Agency in Northeast Philly. But it doesn’t cover all of the medicines, therapies, and equipment that keep Emma alive. Thank God her illness, considered a disability, entitles her to Medicaid, which picks up some of those extra costs.

If not for Medicaid, says Farrington, he and Barish would have had to find $25,000 this last year alone to cover Emma’s care as her condition worsened. Few young families have that many dollars in their pockets. What in the world would they do if Emma loses Medicaid?

“We’d probably sell the house and move somewhere smaller and cheaper,” says Farrington, 40, who, like Barish, works on government contracts.

And then, I’m betting, their family would eventually join the 600,000-plus Americans bankrupted every year by medical expenses.

Farrington lays it all out during my visit with him at Children's Hospital of Philadelphia, where Emma is hospitalized for the fourth time this year for intractable seizures. She dozes through my visit, wiped out by spasms that shook her 43-pound body an hour before I arrived.

“It’s so hard to see her this way,” says Farrington. He shows me the cellphone video he shot in December of his little girl dancing rhythmically to music with her big brother, Ethan, 7. Emma smiles and looks as happy, as she does in the photos Farrington then shares of her at her preschool, Rainbow Academy in Ivyland, where her one-on-one aides are in love with her.

Now, Emma cannot walk. Her face is bloated from steroid therapy. Her belly is swollen from constipation brought on by the high-fat diet doctors hope will help her.

So far, no luck. Her blue eyes look flat as her head lolls on the pillow.

Farrington works on the side as a Realtor, selling about seven houses a year. He donates half of every commission to Rett research. He gives the remainder to charities that support other childhood illnesses. 

“Having a sick child is hard on every family, no matter what the disease is,” he says. “When I do fund-raising for Rett’s, I don’t want people to think I care only about my own child.”

What a heart he has.

If their family loses Emma’s Medicaid benefit, Farrington and Barish will have to use that real-estate money to support Emma’s expenses, not Rett research. That would be a blow, because the research has had a thrilling breakthrough.

Recent studies funded by the Rett Syndrome Research Trust  have been able to reverse the disease in lab mice. The trust is in the midst of a three-year, $33 million campaign to conduct a clinical trial on human subjects.  

A cure is not guaranteed, obviously. But that doesn’t stop Farrington from dreaming.

“There’s a chance Emma could have a normal life – or almost normal, at least,” says Farrington, staring at his beautiful daughter, who looks like her mom and whose big brother misses her like crazy. “She’s only 5. The sooner we can reverse this, the better her chance to have a really good life.”

Emma is only one of the countless thousands of Americans who rely on Medicaid when their luck runs out. Sick kids, disabled adults, the impoverished elderly – there is a real person, a real family, behind every dollar.  Trump’s butchering of Medicaid would trade the well-being of these Americans for tax breaks for those who are already rich enough to buy and staff their own hospitals.

That possibility is not just immoral.

It’s grotesque.