Bella' s Brave Battles
Donation protected
Happy Holidays Friends!
I figured that this time of year is the season of giving and this is so close to my heart that I am asking for your help to make life a little bit easier for my cousins family. Please read until the end even if you can't donate we would welcome prayers and good energy sent thier way as well.
Meet Isabella.
She is 4 years old and THEE bravest, sweetest little girl I've ever met. Here is just some of her history and in closing you will understand why I am asking for your help.
The history: Isabella (Bella) was born full-term without complications in January 2014 and lives in a suburb of Rochester, NY with her parents and two older brothers. Within her first six months of life she was admitted to the ICU for respiratory distress three times. It was found that Bella aspirated when she swallowed liquids and also aspirated from reflux. Over the next year medications and thickening were tried, but did not help.
At about age one Bella was diagnosed with central and obstructive sleep apnea. This led to two surgeries, first to remover her tonsils and adenoids, then to remove her lingual tonsils. Due to the apnea Bella is also required to sleep on a pulse oximeter and BiPAP.
At about 14 months old Bella was diagnosed with Chiari Malformation and underwent neurosurgery, as she was experiencing profound balance problems. The surgery involved shaving away part of the inside of Bella’s skull, cutting away part of her first vertebra, and grafting her Dura to alleviate pressure on her brain stem. It was possible that surgery could fix all of Bella’s issues, but the only change we noticed was drastically improved balance.
As surgery, medications and thickening did not alleviate her reflux at 18 months Bella spent 28 days in the hospital while undergoing a feeding tube trial and having a J-tube placed. With this, Bella is not allowed to drink anything and the tube is connected to a small feeding pump that Bella carries with her in a backpack. Bella remains able to eat/swallow solid foods, but is dependent on her tube for hydration. This was successful at managing her reflux.
Over the next couple of years Bella has struggled with constipation and was admitted three times for bowel clean-out. The constipation lead to questions as to the adequacy of Bella’s motility.
Things remained status quo until August of this year when Bella was seen by Dr. Greenfield, a neurosurgeon in NYC that is a specialist in Pediatric Chiari. He saw further potential surgical option for Bella but wanted to ensure motility and Dysautonomia testing were pursued first. Shortly thereafter Bella spent five days in Columbus, Ohio to undergo motility testing; then eight days in Dulles, Virginia for Dysautonomia testing.
After completing that, Bella returned to NYC to see Dr. Greenfield again. It was decided Bella will undergo neurosurgery again in December of this year. This will require her to stay in NYC for at least ten days after surgery which is scheduled for December 2nd.
It is believed that Bella’s right cerebellar tonsil is putting pressure on her vagus nerve, impairing its function. The surgical plan is to alleviate the pressure by shrinking the tonsil. This again holds the potential of fixings all of Bella’s issues and getting her off her feeding pump and BiPAP.
Bella’s parents are struggling to make ends meet and behind on bills due to the travel expenses, missed time at work, and trying to keep the family together as much as possible. Bella also has an overnight nurse to tend to her and her needs throughout the night.
Bella's Dad : Eric is a supportive husband and great Dad . He is also US Veteran who served our country in the Army National Guard 2001 to 2010 and recieved a Purple Heart from his time served in Afghanistan 07/08. He is now a Police Officer and continues to serve the community as well as his family.
Bella's Mom: Kasey is a dedicated wife and amazing Mom. She somehow balances life for her kids in between work, home and studying to become a nurse. Throughout the past four years of being in and out of hospitals she continues to keep things at home as normal as possible for her kids.
Bella's Brothers: As much as thier parents have been away or in the hospital with thier sister they keep a positive attitude and love thier sister so much.
Bella: She is a superhero. She knows exactly what she has been through and exactly what she needs to do. She is a Warrior and she never complains it cries about what she has endured and what lies ahead. The smile says it all. Please consider donating now to help out with expenses related to travel, time off, and bills for Bella and her family. There is no donation too small. Thank you everyone of you for taking the time to read Bella's story. God Bless you all and God Bless Bella.
I figured that this time of year is the season of giving and this is so close to my heart that I am asking for your help to make life a little bit easier for my cousins family. Please read until the end even if you can't donate we would welcome prayers and good energy sent thier way as well.
Meet Isabella.
She is 4 years old and THEE bravest, sweetest little girl I've ever met. Here is just some of her history and in closing you will understand why I am asking for your help.
The history: Isabella (Bella) was born full-term without complications in January 2014 and lives in a suburb of Rochester, NY with her parents and two older brothers. Within her first six months of life she was admitted to the ICU for respiratory distress three times. It was found that Bella aspirated when she swallowed liquids and also aspirated from reflux. Over the next year medications and thickening were tried, but did not help.
At about age one Bella was diagnosed with central and obstructive sleep apnea. This led to two surgeries, first to remover her tonsils and adenoids, then to remove her lingual tonsils. Due to the apnea Bella is also required to sleep on a pulse oximeter and BiPAP.
At about 14 months old Bella was diagnosed with Chiari Malformation and underwent neurosurgery, as she was experiencing profound balance problems. The surgery involved shaving away part of the inside of Bella’s skull, cutting away part of her first vertebra, and grafting her Dura to alleviate pressure on her brain stem. It was possible that surgery could fix all of Bella’s issues, but the only change we noticed was drastically improved balance.
As surgery, medications and thickening did not alleviate her reflux at 18 months Bella spent 28 days in the hospital while undergoing a feeding tube trial and having a J-tube placed. With this, Bella is not allowed to drink anything and the tube is connected to a small feeding pump that Bella carries with her in a backpack. Bella remains able to eat/swallow solid foods, but is dependent on her tube for hydration. This was successful at managing her reflux.
Over the next couple of years Bella has struggled with constipation and was admitted three times for bowel clean-out. The constipation lead to questions as to the adequacy of Bella’s motility.
Things remained status quo until August of this year when Bella was seen by Dr. Greenfield, a neurosurgeon in NYC that is a specialist in Pediatric Chiari. He saw further potential surgical option for Bella but wanted to ensure motility and Dysautonomia testing were pursued first. Shortly thereafter Bella spent five days in Columbus, Ohio to undergo motility testing; then eight days in Dulles, Virginia for Dysautonomia testing.
After completing that, Bella returned to NYC to see Dr. Greenfield again. It was decided Bella will undergo neurosurgery again in December of this year. This will require her to stay in NYC for at least ten days after surgery which is scheduled for December 2nd.
It is believed that Bella’s right cerebellar tonsil is putting pressure on her vagus nerve, impairing its function. The surgical plan is to alleviate the pressure by shrinking the tonsil. This again holds the potential of fixings all of Bella’s issues and getting her off her feeding pump and BiPAP.
Bella’s parents are struggling to make ends meet and behind on bills due to the travel expenses, missed time at work, and trying to keep the family together as much as possible. Bella also has an overnight nurse to tend to her and her needs throughout the night.
Bella's Dad : Eric is a supportive husband and great Dad . He is also US Veteran who served our country in the Army National Guard 2001 to 2010 and recieved a Purple Heart from his time served in Afghanistan 07/08. He is now a Police Officer and continues to serve the community as well as his family.
Bella's Mom: Kasey is a dedicated wife and amazing Mom. She somehow balances life for her kids in between work, home and studying to become a nurse. Throughout the past four years of being in and out of hospitals she continues to keep things at home as normal as possible for her kids.
Bella's Brothers: As much as thier parents have been away or in the hospital with thier sister they keep a positive attitude and love thier sister so much.
Bella: She is a superhero. She knows exactly what she has been through and exactly what she needs to do. She is a Warrior and she never complains it cries about what she has endured and what lies ahead. The smile says it all. Please consider donating now to help out with expenses related to travel, time off, and bills for Bella and her family. There is no donation too small. Thank you everyone of you for taking the time to read Bella's story. God Bless you all and God Bless Bella.
Organizer and beneficiary
Susan Hoagland Zornes
Organizer
Swedesboro, NJ
Kasey Perkins
Beneficiary