Marco Loses 'Little Sister'

By Roger LaLonde

Staff Writer

Amanda Buddemeyer was diagnosed with a rare digestive disorder when she was just 1 year old.

From that day her fight for a normal life was shared by family, friends, and a host of doctors.

Amanda died Oct. 11. She was only 9 years old. But she will be remembered, always, by those who knew her for her spirit and cheerfulness.

The odds were against her, but she battled. Although she became intravenous-dependent in 1999 at age 6, she continued going to school, made friends, even played sports.

Finally, in March 2002, she stopped playing soccer, and soon her basketball days were over. By that time she already had undergone seven surgeries.

Amanda was placed on a donor transplant list that summer for a multiple-organ transplant as the disease, intestinal pseudo-obstruction, continued to decimate her digestive tract.

Still, she played with her friends. With her family she fought a valiant fight to be normal. On Jan. 27, 2003, she underwent a multivisceral transplant that provided hope for her to get back to a life of being a little girl again, going to school and hugging her dog, Rosie.

The months that followed were extremely difficult. Her body was rejecting the surgical procedures as she remained at Jackson Memorial Hospital in Miami.

Her family and friends rallied around her. Her school friends even put on a talent show, a 28-act program that they videotaped and sent to her.

Amanda returned home for the first time since her surgery on June 27, amid a cheering crowd, honking horns and neon posters and balloons at the foot of the Judge S.S. Jolley Bridge.

She was a little girl again.

She was at home with her family and friends, and Rosie.

"We knew her system wasn't functioning at capacity at that stage, and her organs were not working because of rejection when we brought her home," said Amanda's mother, Monica Buddemeyer.

"I insisted that the doctors let us come home, Amanda wanted to come home so bad," she said. "She did get to do everything. She saw her friends, her dog. She lived for Rosie. She got to see the July Fourth fireworks. Even though she was sick, it was good."

Brianna "Booey" Blassneck was one of the friends who got to be with Amanda. Her parents, Gina and Bob, are good friends with Amanda's parents, Mike and Monica.

"I thought of Amanda as my sister, my little sister," said Booey, a fifth-grader. Amanda would have been in third grade.

Booey added: "I biked over to her and we talked about how she wanted to be normal. We both liked to draw and talk. We talked about her singing and acting once she could do anything."

Victoria DiSciullo, a third- grader, also was very close to Amanda.

"Victoria was devastated," her mother, Terri, said after Amanda's death. "Victoria was very fortunate to have gotten to play with Amanda in August. They played for three hours and had a great day.

"Amanda's illness did cause us to have open communications. She knew of the possibility that Amanda could die."

Amanda's condition worsened, and she was back in the hospital by Aug. 14. A second transplant had to be done. It was performed on Oct. 4, but to no avail.

Monica Velasco, transplant coordinator at Jackson Memorial Hospital, spoke of how hard the family fought.

"They always fought for Amanda," she said. "From the beginning they always tried to make the right decisions on her behalf. We actually became good friends. They are very special to all of us.

"Monica was always at her bedside, always involved in Amanda's care - unfortunately something we don't see here frequently. They are one of the loveliest families I ever met.

They were very easy to work with and became very well-educated on the illness."

Mike Buddemeyer said they not only became more educated, they decided to help others.

"As we became more involved with her illness, we saw and learned how little people knew," he said.

The family first started a Web page to keep friends informed about Amanda's condition, but it quickly became an educational site for the disease.

They developed frequently asked questions, adding medical terms and links to other transplant locations around the country. They also added a foundation in Amanda's name.

"Few people think about donating their intestines," Mike Buddemeyer said. "They are not something that is talked about, like kidneys, livers, retinas. Large retrieval centers in Orlando and Miami don't even ask for them. I guess it is hard to ask for, especially when it is for a child. I doubt a parent of a young child wants to think about that."

He also talked abut the difficulty of having a child diagnosed with the disease.

"You know when you are told that your child will need a transplant, it isn't until you are waiting for a donor that the realization hits," he said. "You don't just walk in and bam, the child is fixed. When we talked with other parents, it really opened up their eyes."

He also talked of the hardship the illness caused his other children, Samantha, 10, and Melissa, 21 - particularly Samantha, who lives at home.

"With us being gone a lot, it was hard for her to have a life," Mike Buddemeyer said.

The Buddemeyers are grateful for the support they received during Amanda's illness and now.

"We have received e-mails from all over the world, many from people we've never met.

The feeling of love they gave us will be with us the rest of our lives," Mike Buddemeyer said.

Said Monica Buddemeyer: "If anything, this has taught us how different people are than what you see on the news and the terrible things people can do. The amount of people who poured out their love, their prayers, has been unbelievable."

Feelings for Amanda and the family were expressed by members of Tommie Barfield Elementary School.

"When Amanda came into the room, she brought joy and sunshine," first-grade teacher Diane Jerrett said. "There is no way to adequately explain the feelings that she brought to all of us and how much she will be missed."

Donna Condee, also a first-grade teacher, said the school was blessed to have had Amanda for as long as it did. "She touched our hearts in a very tender and joyful way," Condee said. "When I went to their house and saw the angel wings on the porch (this week), I was overcome with love for her and her family. She will always be a part of us."

Principal Jory Westberry said Amanda's strength and perseverance made her a role model.

"Her inner beauty was a beacon to all," she said. "Her family showed the same strength and beauty and we are richer for knowing the whole family."

Victoria DiSciullo told her mother: "Mommy, Amanda won't be in pain anymore and will be in heaven with the angels."

Said Booey Blassneck: "Amanda's wish to be normal now will come true. She can do anything she wants now."

An event that Amanda loved, the Tommie Barfield Pumpkin Patch, will be held Saturday, Oct. 18, the same day as Amanda's morning funeral.

Mike Buddemeyer knows that many of Amanda's school friends will come to the funeral.

He also hopes they go to the Pumpkin Patch.

"That was one of Amanda's favorite events. It was always a lot of fun. I urge everyone to attend," he said.

The funeral will be at 10 a.m.

at San Marco Catholic Church, followed by burial at Marco Island Cemetery. There will be a reception in the church's parish center following services.

Visitation will be 6 to 8 p.m.

Friday, Oct. 17, at Hodges-Josberger Funeral Home. Cards, letters, pictures and poems may be left at the funeral home, or at the church for Amanda and her family, Monica Buddemeyer said.

Amanda is survived by her parents, sisters, and grandparents, Lee and Gloria Buddemeyer and Juan and Elsa Manfredi.

The Buddemeyers prefer that, rather than flowers, memorials be made to the Child Life Department at Jackson Memorial Hospital.

"Child Life specialists try to make a child's stay in the hospital as stress-free as possible," Monica Buddemeyer said. "We can tell you that Amanda spent many happy hours in playrooms in several hospitals, and the work that Child Life specialists do is very important to us."

Donations can be made to Child Life, in care of the Jackson Memorial Foundation, 901 N.W. 17th St., suite G, Miami, FL 33136.

Donations also can be made to the Amanda Buddemeyer Trust Fund, First National Bank of Marco Island, 650 E. Elkcam Circle, Marco Island, FL 34145.

All funds will be used for final arrangements, and the remainder will be donated to Child Life, the family said.

Copyright © 2003 Naples Daily News. Published in Naples, Florida.

This article posted October 21, 2003.