Monday, June 18, 2018
Health

For dying toddler with MLD, celebrating each day is treasured ritual

CLEARWATER

Savannah Hurst wore a black-and-white dress and a paper tiara. Her eyes darted around the dining room, checking out guests, as her mom cut the turtle-shaped birthday cake. A Tinkerbell video jingled in the background. A single candle flickered over the cake's green icing. Her dad, Joe, kneeled next to her. It was March and Savannah was 31 months old. "No drinking, and you can't date yet," Joe said, kissing her above her lips. Maybe Joe was getting ahead of himself, but he had to. Savannah is 2. She might not see her third birthday. So her parents are celebrating her birthdays now, one every month.


Joe Hurst leans into daughter Savannah during March's monthly birthday party at the family's home in Clearwater.

John Pendygraft | Times

Joe Hurst leans into daughter Savannah during March's monthly birthday party at the family's home in Clearwater. "Just because you're 31 doesn't mean you can act out," he joked. "No drinking, and you can't date yet," he told her.


Savannah was born on a warm, rainy Sunday in August 2010.

"The first time she grabbed my finger and gave me that look, that was it," Joe said. "I melted."

Savannah soon sprouted tight golden curls. Her button nose looked like her dad's.

When her brother, Jackson, teased her, she wrapped her tiny hand in his hair and pulled. When her Grandpa visited, she pointed at his pocket, then at her piggybank.

She was babbling by 6 months. Walking at 10. Right on cue.

But one day, as Savannah toddled across the house, her pinky toes were raised off the ground.

That's strange, thought her mom, Renee.

Savannah was just learning to walk, said the pediatrician. Totally normal.

A few days later, Savannah awkwardly arched her back in the crib. Then, her left eye drifted toward her nose. Soon, she started dragging her foot.

Back to the doctor. This time, a neurologist. An MRI.

Savannah stopped walking.

Doctors kept guessing at what was wrong. After a year, Savannah spoke her last words. Her legs stopped moving.

Finally, at the hospital, they got a diagnosis.

"She has white matter on her brain," the doctor said. "There's no cure."

• • •

Metachromatic leukodystrophy — MLD — affects about 1 in 40,000 people in this country.

The disease is genetic and contracted only when both parents are carriers. Savannah had a 25 percent chance of getting it.

So did 5-year-old Jackson. After Savannah's diagnosis, his parents had him tested, and though he is a carrier, he will never get the illness.

MLD patients die from pneumonia, an infection or other effects of a broken body.

Renee and Joe searched for solutions — bone marrow replacement, stem cell research. They found no guarantees, no assurance that Savannah would not be left in a vegetative state.

One day, Renee sat Joe down, uncertain he was ready to hear what she needed to say.

When the time comes, she said, I don't want Savannah on life support. No resuscitation.

"I don't want her to go through this just because we want her to be here," she told him. "I'd rather let her go."

Whatever time she had, they decided, was going to be enjoyable.


• • •


In April, the Hurst family took Savannah to SeaWorld. Her vision had faded, but she smiled at the music and sounds of the dolphin show.

John Pendygraft | Times

In April, the Hurst family took Savannah to SeaWorld. Her vision had faded, but she smiled at the music and sounds of the dolphin show.


How do you squeeze a little girl's life into a few months?

April 1:

The family slipped into the handicapped row as the SeaWorld show filled with screeching children.

A trainer stepped out to a balcony in a pink wetsuit. Amid crescendoing applause, she dove into a pool of dolphins. The dolphins took the cue and propelled her across the water on their backs.

Savannah couldn't see any of it, but the music filled her ears.

She let out a tiny squeal. Her eyes widened. Her cheeks tightened into a slight grin. Her hand flipped up in a fist-pump motion.

April 22:


John Pendygraft | Times

Renee Hurst gets a smile from Savannah as Jamie Chorny paints her nails during “ladies day” on April 4. The friends take a long lunch on Mondays and pamper Savannah.


Savannah rested in her stroller as Jamie Chorny, 36, her mother's best friend, gave her a pedicure.

It tickled and Savannah jerked her foot.

She got a cotton-candy-pink pedicure. Some weeks, mom and daughter get a matching color.

They won't get to do makeovers before the prom, or go on college tours, or learn together how to walk in high heels. But they can do this now.

Renee caressed her daughter's hand.

"You've got Daddy's fingers."

May 7:

Her mom helped Savannah press her tiny palm onto the wet canvas. Friends had painted their hands on the canvas for her 33rd-month party.

She had all but outgrown her wheelchair. Her eyesight was gone, but she smiled at familiar sounds — her grandfather singing jazz, her big brother's giggles.

In the center of the canvas were Jackson and Savannah's overlapping hand prints. They formed a blooming purple flower.

• • •

Joe, 38, manages real estate. Renee, 37, has stopped working as a massage therapist to be with Savannah. The Hursts figure they have spent $250,000 on their daughter's care.


Renee Hurst takes an extra moment with Savannah while moving her daughter from her wheelchair to cushions in the family's living room.

John Pendygraft | Times

Renee Hurst takes an extra moment with Savannah while moving her daughter from her wheelchair to cushions in the family's living room.


Their insurance pays for hospice care, including necessary medical equipment. Fundraisers and a PayPal account have helped defray expenses.

And little things help. Friends make them dinners. Jackson's school donates his tuition. A friend's company donated a wheelchair ramp.

In the hardest times, Joe and Renee take comfort in their faith. They believe there is another life awaiting Savannah in which she will not suffer.

A RESOURCE FOR FAMILIES

A children's story helps explain a severe illness in a family

Inspired by the relationship between Savannah Hurst and her brother, Jackson, reporter Meredith Rutland and artist Don Morris created a children's book that would help parents explain the loss of a loved one.

Read the children's story: "When Savannah Got Sick"

They talk to Jackson about God. At times he has struggled in Savannah's puzzling world of forced smiles, feeding tubes and hospital visits.

He adores his baby sister and kisses her every day after school. But he knows something is very wrong.

"Mommy, Savannah looks like she's dying," Jackson said one day. "Daddy, why are you crying?"

His parents said doctors were doing all they could.

"There's no cure for what she has," Renee told her son.

That makes me sad, said Jackson. Once, he said he wished he could take his sister's place.

"He's mostly a happy child, a very big love bug,'' said Jodi Dangler, a teacher's aide at Jackson's prekindergarten class at Skycrest Christian School.

On those difficult days, the staff talks to Jackson about Bible lessons.

They use small words. They talk about heaven.

• • •

Each night, Joe and Renee settle Savannah into pillows at the center of their bed. They sleep on either side of her.

When Savannah sighs, they peek over. If she gasps in the middle of the night, no one sleeps.

She stays sandwiched between her parents as they listen to her raspy breathing. Sometimes Jackson leaves the room he once shared with Savannah and crawls into bed with them.

In the morning, they start celebrating again. Every day now is a special occasion.

On Friday, her parents are throwing a pool party.

     
 
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