Dozens of family members, friends and others gathered together to celebrate the life of 6-year-old Abigayle “Abbie” Piacentini May 1.
Abbie, the daughter of Rebecca Piacentini and the granddaughter of Anthony and Jerri Piacentini, died on April 27.
Abbie was born with Bainbridge-Ropers Syndrome — a rare genetic syndrome that leads to conditions that may include intellectual disability, severe feeding proplems, motor skill issues and more — and had a severe motility disorder which causes nausea, vomiting and more due to complications with the intestinal tract.
“It means her brain told her small intestine there was a blockage but really there was nothing there but her body acted like there was,” Rebecca said.
After giving birth, she said, it was clear there was an issue and anytime they’d try to feed Abbie, she’d get violently sick.
“It was just a nightmare and we struggled with that for, like, five years,” Rebecca said.
She said it was stressful because as both a new and single mother, she felt a lot of her concerns were shrugged off and nobody could diagnose Abbie.
One night Rebecca, Anthony and Jerri were all watching the news when a story came on about a little boy who, after further listening, seemed to have all the symptoms they were seeing in Abbie, who was 2 years old at the time.
“We just knew that we had to talk to this lady,” Rebecca said.
She said they tracked her down and were able to get the specialist — Dr. Ajay Kaul at Cincinnati Children’s Hospital Medical Center who focuses on motility disorders, feeding disorders, Gastrointestinal problems in children with special needs — and were able to get in to see him.
After meeting with the family, Rebecca said Kaul diagnosed Abbie with mild to moderate as a B class — A is some rough patches but the disorder goes away and the child never deals with it again and with C the disorder spikes in the child and they might be ok but then they fade and fade and don’t make it, according to Rebecca.
After returning home, Rebecca said they followed Dr. Kaul’s advised plan of a puree regimen for Abbie and that seemed to work for about nine months until the almost 3 years old came down with a bad respiratory infection and then later another infection and another infection.
Rebecca said in her almost seven years of life, Abbie had close to 20 PICC (Peripherally inserted central catheter) lines and more than 200 or so IVs.
“She’s had a lot,” she said. “It was a lot.”
Over time, scar tissue built up and veins were unusable.
Come December 2017, they went back to Arkansas Children’s Hospital with a mycobacterial infection and was put on more medicine and sent home.
After a weekly blood draw, Rebecca said it was revealed that Abbie had developed a fungus infection from her PICC line.
She said she had to make a decision about treatment, either decision a lose-lose in Abbie’s case, potentially leading to hospice for the young child.
“Abbie was not going to get better,” Rebecca said. “So, I just chose for her … I did not want to play guinea pig with her any longer. She had dealt with that for almost seven years.”
The final decision Rebecca and her family made was to bring Abbie home and make her as comfortable as possible, praying that when she went, she went fast.
Abbie died just four days short of her seventh birthday.
May 1, the family decided to hold a birthday celebration in her honor and release balloons.
“It’s amazing to me … there were many people that came to our celebration that I’ve not ever met,” Rebecca said.
Abbie’s favorite thing was to look out the window.
Her grandfather, Anthony, built a pinwheel box outside the window so that when Abbie returned home after that last hospital stay, she’d have something to look at.
Rebecca put an idea on Facebook for anyone interested to send a pinwheel so Abbie would be able to look out and see more.
She said she figured they might receive 15-20 altogether but come May 1, more than 600 adorned the front yard and plenty more — close to 900 altogether — were in the house waiting to be unboxed.
Rebecca said she was overwhelmed, in a good way, and was comforted to know, in the end, what Abbie meant to others.
“Just the love and support of a community … I didn’t truly realize that Abbie had touched so many lives,” she said.
Rebecca said they had signed up for a study to look at the kind of fungus Abbie had for doctors to be able to learn from the rare situation Abbie had gone through.
She said they told her their goal within two years was to be able to catch the fungus sooner.
“That makes me feel special,” Rebecca said. “Didn’t help Abbie, but it’s going to help someone else and that’s big for me.”
In addition, she said, she’s found herself able to give other parents words of advice and share her opinions and it’s comforting to know that Abbie did not go through that pain for nothing, not that Rebecca believes she did.
“She changed my life,” she said. “She taught me more about kindness and patience and love and compassion than I think I ever would’ve learned from her.
“Her life had a purpose and I believe that God gave her to me for a purpose. Her life will never be looked at as in vain. Her pain and suffering will not ever be looked at as in vain for me. She changed my life.”
Rebecca’s everyday was planned about Abbie and her needs and she said she’s found herself most sad when it’s time for medicine or to hook her up, responsibilities Rebecca doesn’t have anymore.
“I really miss her,” she said. “It’s hard. My sadness is not sad, for her. She’s in a way better place than any of us are. I am happy for her. I am sad for me. Her being in Heaven … overjoyed for her. She is doing things that she was never able to do on this Earth.”
While Abbie will never be forgotten, Rebecca said she is excited to one day be able to share nothing but happy memories with her family and be able to tell, Margaret — who she recently gave birth to with fiance Brandin Hollingsworth — all about her big sister, Abbie.