After facing multiple medical challenges & surgeries the past few months, Fiona is again in the hospital after becoming unresponsive over the Fourth of July weekend. She is currently stable, but on a ventilator and breathing tube while awaiting a tracheostomy.
Kirk & Andrea are currently at C.S. Mott Children's Hospital beside Fiona. Since the pandemic has taken away our ability to provide in-person support and homemade meals, let's help by donating to help alleviate any financial burdens. It would also help the Bells order local food and coffee through Uber Eats.
The Bells genuinely have the biggest hearts, and I know any donation will be so appreciated.
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Here's an abbreviated history of the Bell's journey:
"We first learned that we were pregnant after being told we likely never would be. So Fiona's existence to us is already a miracle. We learned of Spina Bifida at week 17.
We quickly relocated from Chicago, IL to Ann Arbor, MI in August of 2019 in order for Fiona to receive care at U of M Mott Children's Hospital and be closer to immediate family.
Fiona has Myelomenigacile, a severe type of Spina Bifida. Essentially a birth defect of the spine. Fiona also has Hydrocephalus and Chiari II Malformation.
Fiona underwent her first surgery the day she was born, a seven hour operation to close her back which was born with her spinal cord exposed. Two weeks later she had a VP shunt placed to help manage her Hydrocephalus. After three weeks in the Mott NICU, Fiona came home to continue her 12 week recovery as a side lying baby.
In March of 2020 Fiona began demonstrating challenges swallowing, a symptom of the Chiari II Malformation. In early May, after her first ambulance ride, she underwent her third and fourth brain surgeries for a Chiari II Decompression. She spent a few weeks in the Mott PICU and then continued to recover at home as we learned a new care routine with a NG feeding tube and home suctioning tools.
In July, Fiona experienced a terrifying respiratory event at home involving CPR and her second ambulatory ride back to Mott. It was determined that swelling at the base of the brain was causing partial vocal chord paralysis limiting and restricting her airway. The next step for Fiona to establish a safe airway at home is a tracheostomy. Fiona is currently admitted awaiting this procedure.
All to say, Fiona continues to show us how unbelievably brave she is. Which teaches us how to be braver than we even knew we were capable of being. Our goal as a family continues to be to raise Fiona in an inclusive space that celebrates differences. "
-Andrea, Fiona's mama
- Marla Bell
- Ann Schomberg
- craig Steels
- carol hazy
- Lori Gonzalez
Organizer and beneficiary
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