A wish comes true for Ellah

TILTON — It’s a Thanksgiving lesson for all of us: Stay optimistic for your wishes to come true, and be grateful when anything wonderful happens. In the meantime, live each day to the fullest.

Ellah Murray, age 5, was born prematurely with a seriously damaged throat that made breathing perilous and impossible at times. She has undergone 23 surgeries since birth, survived brain bleeds and a coma, and endured 19 emergency insertions and extractions of breathing tubes to save her life.

Two years ago, the COVID-19 pandemic put the family's first vacation — Ellah's Make-A-Wish Foundation trip to Walt Disney World Resort in Florida — on hold for what seemed like forever.

On Nov. 8, Ellah, her parents Mike and Stephanie, and her little sister Madilyn, age 3, finally flew to Orlando, getting settled just in time for a hurricane that shut down the park and rides. Joined by Ellah’s grandfathers, Grandpa Lee and Poppa Bill, who helped with the round-the-clock caregiving and a watchful eye that Ellah requires, they hunkered down in place. And they waited.

Finally, the storm broke and their adventure began — beyond the family’s expectations.

Throat surgery last year removed the problem section of Ellah’s windpipe, making breathing much less labored — and it enabled the family to fly together and Ellah to negotiate the airport with her walker. Although speaking is still a challenge, Ellah receives physical, occupational and speech therapies as a kindergartener at Sanbornton Central School, and she is eager to convey her feelings. The joy from the Disney trip still shines in her eyes.

Especially memorable was the family’s safari through Disney’s Animal Kingdom park.

Did you see a lion? “Yes!” Ellah exclaimed.

How about a giraffe? “Yes!”

A baby elephant? “Yes!”

Her little sister gives a high-five and bumps fists.

“We got to see monkeys and a lion’s paw when he was hiding behind a tree,” said Stephanie. The family got tickets to Mickey's Very Merry Christmas Party after the park closed at 4 p.m., and a light show exploded in the sky behind the Magic Kingdom castle.

“It was pretty neat,” said Ellah’s dad, Mike. Complete with cookies, candy canes, hot chocolate and Christmas tree lights, “it was like having your own Christmas party at Disney World.” The family returned with a star ornament for the top of their own tree.

For Ellah, “It was a little bit of everything,” Stephanie said. “The excitement of all the kids going on all the rides.”

And it was a needed vacation for everyone. Nursing care for Ella at the Murrays' home ended during COVID, when health care workers were in short supply — and still are. Stephanie and Mike are constant caregivers for their little girls. Ellah has a nurse at school. A pump delivers her nutrition and medication through a tube connected to a port on her body.

For the family, the long-awaited trip was a dream come true. Ellah “was looking forward to it, and we were as well. We were looking for that respite,” Mike said. “If you leave her by herself for a minute she can get hurt very quickly. It entails a lot of mental fatigue.”

During a normal school week, Ellah attends half-day kindergarten. This week she was home with Madilyn, enjoying unstructured playtime. She picked up her baby doll, inserted a pacifier in the doll’s mouth, and rocked her gently before placing the doll in a little toy crib.

“You’re a good mom,” Stephanie said, her eyes twinkling.

At school, Ellah is a favorite classmate, with a ready smile and happy "hello" to the other children, who look forward to her arrival as she treads the hallway and classroom carefully with her walker — the same way she traversed the field last year at Fenway Park during the Kids Run at a Boston Red Sox baseball game.

“All the kids adore her,” Stephanie said. “Ella’s a sweet, innocent girl. She wants to hug everyone. She says good morning to all the kids” in class.

“This is all normal to her,” Mike said, smiling. “It’s what she’s always known.  She didn’t start crawling until Madilyn was born.”

It’s clear that her parents are fatigued by their constant vigil, but theirs is loving mission. They are grateful that Ellah doesn’t have to grow up in a hospital setting with 24/7 professional care.

“It is what it is,” said Mike, who helped Ellah round the bases at Fenway. “And it beats the alternative of a nursing home.”

For two years, Make-A-Wish New Hampshire tried to make the family’s wait for Disney as pleasant as possible. There was a flood of well-wishes, drive-by parades of Make-A-Wish supporters and community members with balloons and gifts, events at Christmas and Halloween, and tickets to fun things closer to home, like visiting Canobie Lake Park, a Disney on Ice show and Fisher Cats games.

“Ellah has the best smile in the world,” said Nikki Lyons-Lahey, vice president of community outreach for Make-A-Wish New Hampshire. “Anything we got we sent their way.”

Since its inception in 1986, the foundation has granted 1,800 wishes to New Hampshire children ages 2 1/2 through 17 with a critical illness or a life-threatening medical condition that is malignant, progressive or degenerative. Wishes can be granted after age 18 as long as the application is received when they’re 17 or younger. Currently, more than 100 youngsters statewide are waiting for their approved wishes to be granted.

“We are very fortunate. We do have folks and friends who include us in their end-of-year giving,” Lyons-Lahey said. “That has to continue to grant all the wishes” in the queue.

To make a donation or to find out how to become involved, visit wish.org/nh.