“Hope Dies Last”

By: Laura Fernando

The diagnostic odyssey to a Ehlers-Danlos syndromes diagnosis is often challenging enough. Add onto that conditions like mast cell activation disorder (MCAD), long-COVID and dysautonomia and getting proper care can be nearly impossible.

Meet Laura Fernando, mother of Lily Fernando, and fierce patient advocate. Read her powerful and moving story of hope, determination and resilience.

-Linda Bluestein, MD

In Studs Terkel’s book, “Hope Dies Last” (a collection of oral histories of social change agents) he interviews Jessie de la Cruz, an activist for the rights of farm workers, who says, “With us, there's a saying, 'La esperanza muere última.' Hope dies last. You can’t lose hope. If you lose hope, you lose everything.”

From thriving and missional ...

When my 14-year-old daughter Lily was 5, we went to a Revolutionary War reenactment. While the other little girls were making corn-husk dolls and scrubbing clothes on a washboard, she was grilling the battalion's surgeon. Fascinated by his medical equipment from the 1700s, she would not let him go until he had explained every piece and the nuances of its function, and they had a nice little chat about surgery without modern anesthesia. He kept asking me if it was OK to continue, and as I looked in her eager eyes, I told him to go ahead.

Seven years later, shortly before COVID, at 12, she was volunteering in our church’s special needs ministry, and leading the packing line at a charity that sent home meals for kids and their families in our city’s poorest neighborhoods over the weekend, when they wouldn’t have access to school breakfasts and lunches. She could organize and manage the entire line herself, often supervising the work of retired men. She was a straight A student, played rec sports, and was active in her community. She loved to kayak, hike, rock climb, play piano and organ and volunteer. She was thriving and missional in her living.

... to wheelchair and PICC line

And then, COVID … The kids and I had it first in June 2020, and again in January 2022. Lily was also bitten by a tick in September 2020 and contracted B. Miyamotoi. She just never recovered well from the first round of COVID, then after the tick-borne illness and then the second round of COVID, and, finally, some minor surgery in March 2022 that went well but proved to be very taxing on her body, she just was a shell of her former dynamic little self.

At fourteen, she now has a laundry list of diagnoses that no adult “should” have, let alone a child. These include postural orthostatic tachycardia syndrome (POTS), mast cell disorder, hypermobile Ehler-Danlos syndrome (hEDS), migraines, dysphagia, abnormal increased muscle tone, muscle weakness, and long COVID. She’s experienced multiple episodes of anaphylaxis requiring hospitalization She developed painful muscle rigidity and posturing after a brief trial of Sertraline, prescribed for chronic pain.

By this summer, she was using a tilt-in-space wheelchair, was fed via a nasogastric tube (though she could barely tolerate any feeds, and lost 30% of her body weight in a few months), experienced constant headaches and abdominal pain, couldn’t read because of visual tracking issues, and was getting worse in every facet of her young life. We saw numerous doctors, most of whom were affiliated with the local children’s hospital. Even with her list of diagnoses, clear onset related to a viral trigger, and no history of mental health problems; every conversation began with the word “psychogenic”. The care was substandard, and, at times, medically negligent. I felt my precious daughter slipping away. I felt hope slipping away.

The plot twist that opened the door to hope

But then … But then, after years of looking and months of waiting, we found a doctor (actually, two - a husband/wife team…) who believed her. Who, honestly, believed me when I said how much I knew my child was physically suffering. How she had never been diagnosed with anxiety. How I took her to the psych eval that kept coming up in recommendations - and the psychiatrist’s only recommendation was getting her a counselor to help her deal with all the medical trauma! How I knew that she just needed a toe hold. Just the tiniest thing to go right and I knew she would pull herself up out of this pit she was in.

See, this isn’t the story you may have thought it was. This isn’t a sad monologue about a once healthy child ruined by COVID. Or a teen who succumbed to the despair and depression of chronic illness, lost her spark, and took her life. This isn’t even the diatribe against physicians that I probably have every right to write …

No.

This is a comeback story.

A story of hope.

And resilience.

A story of a mom who refused to give up, of doctors who looked at the information before them, and took action, and a story of a kid who got her spark back, and has big plans for the future.

She spent three weeks in the hospital late this summer, brave enough to complete a round of DHE infusions for the new diagnosis of migraines, and working out a medication regime that worked well for her. DHE infusions cause miserable side effects. She knew that. She did it anyway. For just over four days, this child was brave and resilient enough to make herself feel worse, in the hope she would, at the end, feel better.

Kicking "psychogenic" to the curb

And, boy, did she feel better! After the first several infusions, her visual tracking issues and dysphagia resolved. After the complete infusion protocol, her headaches (which had been present for the entire two years since the first COVID infection but had never been diagnosed or treated as migraines) were gone. Completely gone. Her abdominal pain was reduced by two thirds. She was increasingly eating more by mouth. For the first time in two years, she was discharged from the hospital healthier than when she was admitted, and was discharged with a solid follow up plan. Her other medications help ease the symptoms of the autonomic dysfunction so that she has the capacity to put in the hard work she needs to with PT and OT. Hard work is not a challenge for Lily. She's always been extremely driven. For her, the real challenge - as her rehab doctor often reminds her - is learning how to rest and recover - how to be still in body, mind, and spirit. To strike that delicate balance most adults have yet to master.

Since returning home, she’s started attending our homeschool co-op and her youth theater classes. She’s organized a toy drive for the Child Life department where she spent those weeks in the hospital. Recently, she was invited to speak to around 100 eighth graders about hope and resilience and recovery.

She nailed it.

She’s not only back to working at grade level, she’s back to working above grade level, and she’s got that spark back. She’s got her eye on starting college while still in high school, and then medical school. She’s determined to be part of the solution to helping kids who’ve gone through similar situations, and she’s back to that tenacious 5-year-old who won’t stop asking questions and parsing things out for herself until she understands.

"Special Forces" Motherhood

As with most chronic illnesses, there are always ups and downs, an (at times) frustrating roller coaster of a learning curve. She’s learning how to take it in stride, work with her doctors, give time and space for recovery, and listen to her body. She’s learning how to advocate for herself and others, and I am learning how to balance advocating for her, and letting her take the reins of her healthcare.

This is a story of resilience - hers, and honestly, mine. Being a mother of a child with often-misdiagnosed, and at times, debilitating, health conditions is not entry-level-motherhood. I told a friend the other day that I feel like I signed up for Girl Scouts and suddenly I’ve been thrown into some sort of Black Ops, Special Forces, kind of motherhood. I’m running rescue missions behind enemy lines here.

But, I know my child. I know her better than any physician, even the great ones we trust that she has now. She’s been through the ringer and comes out still fighting. She’ll be ok.

Because she’s got hope.

And a future.

And she’s got that future because of doctors who said, “I believe you,” a mom who didn’t stop looking for competent and compassionate doctors, and her own fighting spirit. It might not look like what we once thought, but different isn’t bad. And we hope that learning to live with “different” can speak hope in the lives of other families. So they can have their own comeback story …

Lily with friend and mentor, Jenna Zeihen, 2022 Miss Kenosha, Miss Wisconsin 3rd Runner Up and co-Miss Congeniality AND fellow Potsie and MCAS warrior at "Soul Space" - a grass roots movement started at the Kenosha Creative Space by Jenna to bring people together across generations to support each other's growth and resilience through the arts.

Working hard in PT! Lily goes to therapies 4 days a week - this was the first time she had stood, bore weight on her feet, and was able to propel herself in the six months since the reaction to sertriline!