Bella has been fighting since the very beginning.

She arrived early, weighing just 3 pounds 13 ounces, a tiny baby fighting in the NICU. As the months went by, milestones came and went, and Bella’s body began telling a different story. One diagnosis followed another.

When Bella was about seven, a geneticist dug deeper and finally found an answer to the questions. Bella has a rare genetic disorder called Xia Gibbs syndrome.

It affects about one in 126 million people. Her parents and siblings are not carriers. It is simply part of Bella, and a big part of the complex medical life she now lives every day.

But if you ask her mom, Marlene, to describe her, she doesn’t start with any of that.

“Before every OR visit, we say the same thing,” she shared. “Bella is brave. Bella is strong. And Bella is beautiful.”

They have repeated that simple devotion before more than 60 surgeries at Boston Children’s Hospital. Bella has spent well over 500 inpatient days there since birth.

She has vision impairment, cerebral palsy, severe GI issues, a tracheotomy, an ileostomy, and a feeding tube. In 2020, she received her trach, then suffered a cardiac arrest the very next day, spent about four weeks in a coma, and months in rehab at Spaulding and Boston.

Through it all, though, she has never stopped proving that mantra true.

Today, Bella is 18. Developmentally, she’s around five. She uses a full-time power wheelchair and relies on her mom for round-the-clock care.

Marlene left her job as an inclusion specialist to become what she calls a “full-time medical mom,” therapist, educator, and, as Bella proudly says, “Uber driver.”

Bella cannot always describe pain or discomfort with words, so Marlene stays by her side 24/7 when she is inpatient. She knows Bella’s cues, her expressions, the subtle shifts that tell her something is wrong. The path has been hard and rarely predictable, but they walk it together.

“We’re two peas in a pod,” Marlene said. “We just roll with it and make every day count.”

And Bella does not roll quietly.

She is a social butterfly who loves being out in the community. Her calendar is as full as any teenager’s, just with a more creative twist. See if you can keep up.

Bella loves: Bingo and Uno; Adaptive skiing in the winter; Adaptive horseback riding at Windrush Farm (where she rides up on a special lift and then down onto her horse); Adaptive kayaking, which she calls “boating”; Adaptive basketball, adaptive cheer, and even time on the ice with her walker. (We’re exhausted just reading that!)

“She has no fear,” Marlene said. “I second-guess things, and Bella’s like, ‘More bumps, please.’”

She also loves school. Bella attends Kennedy Day School at Franciscan Children’s Hospital, where she’ll stay until she is 22. On Fridays, she participates in a program where she goes out into the community with peers, visits food pantries, and helps deliver packages and crafts they’ve made.

She loves her monthly workbooks from the library, especially the cut-and-paste and matching pages. She hits the hair salon every Friday. She sings along to “Shake It Off.” She enjoys pizza, yogurt, and what she calls the “popcorn restaurant,” where she orders steak tips medium well or shares a fisherman’s platter with her grandpa.

This is Bella: brave, strong, beautiful, and incredibly social.

And that is exactly why transportation matters so much.

Their old 2011 accessible van spent years pushing past its limits. The shocks broke. A significant hole opened in the bottom. You could hear the wind rushing up from the road as they drove over Boston’s potholes and through winter snow.

Every trip came with a quiet, constant fear: Is today the day this van finally breaks down? What happens if it does?

Without a reliable van, Bella cannot get to the hospital for appointments, to her adaptive sports and activities, or even to school.

Thanks to the generosity of the Chive Charities donor family, Bella and her family are receiving a safe, reliable ADA-accessible van that can handle her power chair and all of the medical equipment that travels with her. The total impact is $55,000. But trust us, it goes well beyond a dollar amount.

“I still want to make sure that Bella is known for Bella and not for her diagnosis,” Marlene said. “Even though you have a diagnosis, it doesn’t define who you are. Bella can do anything anybody else can do. It’s our job to find the accommodations to make that happen.”

Every accessible van, every adapted activity, every chance to be out in the world sends Bella the same message they repeat before surgery:

You are brave.
You are strong.
You are beautiful.

Chive Charities is honored to be part of Bella’s story and part of the community that surrounds her with support. But we cannot do it alone.

There are more families just like Bella’s, patching together old vehicles, waiting on repairs, saying “no” to activities because they have no safe way to get there. There are more social butterflies who just need the right wings.

If you would like to help change more lives like Bella’s, please consider supporting Chive Charities today. Your gift helps fund life-changing grants like adaptive equipment, mobility items, and support that keeps families moving forward together. Sounds pretty beautiful to us.

Isabella P.

By Chive Charities

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