Local 5-year-old granted wish, visiting Disney this week
MONTAGUE — Young Ella Bartlett has struggled most of her five short years, and it hasn’t been any easier for her parents.
But this week, Ella is just a kid having a great time at Disney World. This week, Mickey, Minnie, Donald, Daisy, and the entire cast will try to make Ella and her family forget, if only for six days, thanks to Make-A-Wish Foundation.
Born on Oct. 4, 2007, the little girl with long, blond, curly hair and a big smile arrived 15 weeks early.
“Her skin was transparent,” said her mom, Jami Bartlett, 33, of 218 Federal St., the house that Jami grew up in. “My wedding ring could fit around her wrist. It just dangled there.”
Jami woke up bleeding on Oct. 1, 2007, when she was 25 weeks pregnant with Ella.
“I went to the hospital (Baystate Franklin Medical Center) and found out I was 31∕2 centimeters dilated,” she said. “They rushed me to Baystate in Springfield and gave me drugs to stop labor and steroids for her lungs.”
Jami and her husband Seth, 35, had found out just four weeks before that their first child would be a girl.
“We were buying girly, frilly things, and all of a sudden, we weren’t sure she’d ever be able to wear them,” said Jami, who said her pregnancy was a really “big deal” because Ella was going to be the first grandchild on both sides.
“I was put on strict bed rest in the hospital,” she said.
But, three days later on Oct. 4, Jami was bleeding again and was 51∕2 centimeters dilated.
“The baby was coming and there was nothing we could do,” she said.
Doctors and midwives wheeled Jami into delivery and, soon after, 1-pound-12-ounce Ella was born.
“She was not much bigger than a pound of butter,” said Jami. “We were scared.”
She said an entire neonatal intensive care unit team was there in delivery, waiting and wondering.
“They let me kiss her on the forehead and then whisked her away,” said Jami. “I felt like a part of me was ripped away and I lay there feeling empty.”
At the same time, Jami and Seth were “praising God” that their tiny daughter was still alive, but they knew she had just begun fighting for her life.
An hour after Ella was born, Jami was allowed to see her, but could not hold her, because she was too frail.
“I couldn’t see her face,” she said. “All I could see was her little nose because of all she was hooked up to.”
Shortly after they delivered Ella, doctors were delivering the “not so good news,” said Jami.
The doctors warned the couple that Ella could have brain bleeds and that her intestines were not developed and that could mean trouble.
Even after Jami was discharged several days after giving birth to leave her tiny, struggling baby, she would travel back and forth to the hospital each day and sit by Ella’s bedside, talking or reading to her all day long.
“I could hold her hand or sometimes put my hand on her head, but that was the only contact I had with her,” she said. “I had to use my voice.”
On Oct. 8, Ella was taken into surgery with perforated intestines. She had already lost 8 ounces since birth, so no one was sure how she would survive surgery to fix them.
“We thought that was it,” said Jami. “But, it wasn’t.”
On Oct. 19, Jami’s birthday, Jami and her aunt went to spend the day with Ella.
“I walked in, as usual, and the nurse asked me for the first time if I wanted to hold her,” said Jami. “It was the best birthday present ever. When I held her, all of her stats got better. I held her for the longest time.”
Daddy got to hold Ella for the first time on Thanksgiving that year, she said.
“We spent that entire day at the hospital with her,” said Jami.
Ella was supposed to go home early in January 2008, but one day Jami walked into Ella’s room to find doctors standing over her baby, yelling for others to help. Ella’s intestines had ruptured and all Jami could see was blood. Everywhere.
“All I could think was that I was going to lose her,” said Jami.
After another surgery and some recovery time, Ella went home with her parents on Jan. 24, 2008. She was almost four months old.
But, three weeks later she was back in the hospital, and until last year, Ella had spent many weeks in the hospital fighting blockages, struggling to breath and, at one point, doctors lost her for 10 minutes, but were able to resuscitate her.
Today, Ella is missing 80 percent of her intestines. She eats through a tube and has to be fed supplements and nutrients intravenously.
“Through it all, she’s been a real trouper,” said Jami, who has two other daughters now, Aliyah, 3, and Lexi, 2.
“She has been unbelievably sick throughout her short life,” said Jami. “We were even asked, at one of the worst times, if we wanted to just “let her go.”
Jami said her daughter still isn’t out of the woods. She said every day is a challenge for her “amazing kid.”
Ella does get to eat small amounts of food, now and then. Her favorite, she will tell you, is Captain Crunch cereal.
She and her parents take weekly trips to Boston Children’s Hospital, where doctors test and examine her.
Jami said she’s not sure how long Ella will have to be fed through tubes, but said it’s better than not having her.
It wasn’t long ago, a team of doctors came to the Bartletts and said they thought Ella was “a special little girl” and that they had recommended her for Make-A-Wish Foundation, the nonprofit that makes wishes come true for children with life-threatening conditions.
“When the group of doctors walked into the room, I thought ‘Oh no, what are they going to tell me,’” said Jami. “You don’t want to see more than one doctor at a time.”
“They told us Ella was going to be granted a wish,” she said. “Daddy tried to convince her to ask for a bass boat, but Ella chose Disney instead.”
“I want to meet the princesses in the castle,” Ella told her parents. “I want to meet Mickey Mouse and Minnie Mouse.”
Minnie is Ella’s favorite.
The Bartletts are staying on a 70-acre resort for children from around the world who have been granted wishes, just like Ella.
“We will have our own villa,” said Jami. “Everything is accessible and there’s a playground and horseback riding and Disney characters come to the resort to visit the kids.”
Make-A-Wish sent a limousine to the Bartletts’ home to pick the entire family up and bring them to Bradley International Airport in Connecticut on Sunday. Another limo was going to pick them up from the airport in Florida and bring them to the resort, then bring them back to the airport on Saturday.
“We’re going to be treated like royalty,” said Jami.
She said each family member also got tickets to “all of the parks,” and the family had a rental car waiting when they got there.
“It doesn’t feel real,” said Jami, who said she and her husband have incurred a lot of debt over the past five and a half years.
Today and the future
Today, Ella weighs 35 pounds, 3 ounces and is almost 43 inches tall.
“She’s just the most amazing kid,” said Jami through tears. “She never complains — and she doesn’t feel well a lot of the time.”
Jami tells the story of how one time Ella was in the hospital and Jami was feeling depressed as she looked around at all of the sick children.
“Ella was probably 3 years old at the time and she looked up at me and asked me why I was sad,” said Jami. “I told her and she said, ‘We can make them smile, Mommy.’”
So, Ella and Jami went to Kohl’s Department Store and bought stuffed animals and books for everyone. When they returned to the hospital, Ella handed them out to all of her peers.
One of Ella’s favorite things to do is to play in water, but she has to be careful, because she can’t get her tubes wet. So, Jami said a water park might be out of the question while they are in Florida.
“I have found a way to protect the tubes so that she can at least get splashed,” said Jami.
“When I get to Disney, I want to dress up as Ariel (the Little Mermaid) and go on some rides,” said Ella before she left for Disney.
At this point, Jami said her daughter’s prognosis is better than it was before, but not perfect.
“She could turn a corner at some point and not require the IV,” said Jami. “She’s always going to have to be careful, though.”
Jami said she knows people hear the same all the time, but Ella is her hero.
“She is so excited about everything in life,” she said. “Can you imagine going through all of this with a smile on your face? We have a lot to learn from her and children like her.”
Jami said her daughter has developed normally in other ways.
“She loves going to preschool,” she said. “She’s smart and acts like, and is developing like, a regular kid.”
Ella’s favorite thing to do with her daddy when he gets home from work? Wrestle.
“They just have to be careful,” said Jami. “But, there’s nothing better than hearing her laugh while their doing it.”
Jami said help and support from the community and local churches has been overwhelming.
“People have shown so much love,” she said. “We’ve had checks just show up in the mail. It’s truly unbelievable, but then again, so is Ella.”