Just before Thanksgiving, some folks in the town of East Lyme, Connecticut, decided to celebrate Christmas early for the sake of one girl they have taken into their hearts.
Nine-year-old Madeline Guarraia (said Ga-rye-ah) has been living with leukemia since she was four years old. After two remissions, the cancer has returned for a third time.
There will be no more cancer treatments for Madeline. A bone marrow transplant from her little brother Anthony was her last hope.
“We made it six months and that six-month appointment is when it came back again,” says [father Matt] Guarraia with a sigh. “So, like, oh, so devastating.”
But Madeline’s wish is for people to donate toys for other children at Yale-New Haven Hospital, where she has been undergoing treatments.
Madeline’s mother, Amie, has been chronicling her daughter’s long illness at a Facebook page called “Mad About Madeline,” where the cover photo is a Bengal tiger — Madeline’s symbol and inspiration for her “Roar On” motto (seen on many lawn signs around her town).
A tiger is also one of her best pals.
From a December 2014 story from Fox61.com:
It’s not surprising Madeline wants to be a veterinarian, in part due to an affinity for Tigers that she developed just prior to being diagnosed with leukemia the first time. Her parents bought her a life-sized tiger that Madeline named Sun Butter, who has provided unending comfort for her for four years
“When she started going back to school, it happened to be the day of the Halloween parade, and she was bald,” recalled Amie Guarraia. “So, she dressed like a tiger and she felt totally brave.”
Madeline has even worn her tiger costume to some procedures to give her strength. And, she has made it a point to collect tigers to send to sick children nationwide. “She says that the tigers give people strength,” said Amie Guarraia.
On Dec. 14, Madeline, who goes by Maddie, felt well enough to pose with her brother, dad and sister Julianna in elf-style pajamas for a Christmas portrait. There was also some good news in the Facebook post;
Well, today she had another good check up and her counts are somehow still holding their own. On the way to Yale she kept telling me how great she feels and how she thinks she’s going to break all the rules with this Leukemia. We talked about how, despite what we had thought, another Christmas where she is still feeling well is looking more and more promising. It was just a good day. We thought positively and realized that Madeline is going to make her own plan here.
Then another post on Dec. 17 gave no false hope for a cure but continued to show Amie’s wonderment at her daughter’s survival, which even allowed her to see a coveted movie premiere:
Madeline has had a fun week full of friend visits and is actually out seeing the new Star Wars movie with Matt, Juju and friends in a private theater viewing right now. Her ANC is 500 so we have to be careful about germs, as always.
Hospice services have been wonderful for our whole family and Madeline, who claims she is “done” with new nurses, really got a wonderful one which makes all the difference!
So, whatever the future holds, it seems like Maddie may just make it to the Christmas everyone feared she would miss back at Thanksgiving. Like many children who have spent much of their short lives in and out of hospitals, Maddie has an inner strength which has been inspiring adults around her.
That even included a Facebook video (no longer available) from singer Katy Perry in January 2015:
“I just want to tell you that I love you, and that I’m here for you and that I did write ‘Roar’ for you,” Katy said in the video. “So I just want to send you all of my love and my strength and I know you are such a strong young girl.”
In many other ways, the town has rallied around Madeline. As reported on Facebook, also this December, there was a Madeline/Childhood Cancer float as part of the village of Niantic’s (part of the town of East Lyme) Light Parade. The East Lyme Police Department also gave Maddie and her friends a safe and comfortable place to watch the parade, where she wouldn’t be at risk of being exposed to unnecessary germs.
A couple of days before, Amie remembered the previous year, when, while waiting on test results, Maddie was baptized in her hospital room (the name and exact religious affiliation of the cleric performing the baptism isn’t
given, but he’s dressed like a Catholic priest).
Madeline has always, ALWAYS, since she could speak, had a close relationship with God. Which is quite interesting considering we will admit that we do not attend church regularly. Yet every time we went she would sit right next to her Bammy, stare at the cross, listen to EVERY word the priests said, and ask questions that no two or three year old should be able to come up with. And then she would spend days analyzing it all. Often times we would find her in her room looking at religious books and just staring at the pages. We knew there was always something more to Madeline than we would ever understand. She has brought faith to many who see her inexplicable connection first hand. And she said upon second diagnosis that she felt “like she was God’s helper.” It was a beautiful and simple baptism, full of many emotions. She was SO sick in this picture but was so happy about this special moment.
No human words can adequately explain why horrible diseases strike children or why they are made to suffer in so many ways. But it is a grace to everyone else if they see see a small person so filled with courage and hope in spite of their pain and fear.
All lives are precious, no matter how brief.