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Girl plans Dance-a-Thon to raise awareness of rare condition

April 7, 2016
Westfield Republican

On April 30, 2012, Cassidy Phillips, then six years old, went to her Nana's house like she would every Monday morning. Breakfast was done and she was playing 'sock monkey' with her younger brother and sister.

All of a sudden, Cassidy went to her Nana, Janet Greene, and told her that she didn't feel well. Her Nana thought she was faking because she didn't like school, and told her to use the bathroom. Cassidy started to spin and couldn't find the bathroom in the Westfield-area condominium where she had spent significant time since she was a baby. Her Nana grabbed her shoulder to steady her, and guided her into the bathroom.

Janet immediately called Cassidy's mom, Jennifer Phillips, who was already at work, and Cassidy talked to her mom while Janet called 911. Jennifer asked Cassidy who she was with and she said "Daddy and the lady from the beach." Janet grabbed the phone, urgently talked to Jennifer, and carried Cassidy to the couch.

Article Photos

Submitted photo
Cassidy Phillips, right, is pictured with her aunt, Adele Harrington. Cassidy, 10, has a arteriovenous malformation, and is planning a Dance-a-Thon to raise awareness of the condition April 17.

The other children were scared and crying as they watched their sister's condition deteriorate rapidly. As her Nana held her in her arms, Cassidy blacked out, and the otherwise healthy and active little girl was unresponsive. At that moment she suffered a grand mal seizure.

That's when it all began

The Westfield Emergency Squad rushed her to Westfield Memorial Hospital and her family began pouring in the doors. Teachers were pulling Cassidy's classmates away from the windows at Westfield Elementary School right next door to the Emergency Room, as this chilling event was unfolding in front of their eyes, just as they were entering school to begin another day of learning and funwithout their friend in the first-grade classroom. The capable medical team stabilized her there and expeditiously did tests to try to find the problem. They narrowed it down but knew she needed more advanced care, so they decided to airlift Cassidy to the Buffalo Women and Children's Hospital.

The doctors and nurses worked frantically to revive Cassidy, and her family paced the hospital floors as they awaited more news on her condition and arrival of the Mercy Flight team from Buffalo. She took her first helicopter ride all by herself! When she got to the Children's Hospital they did many more tests and determined that she had an arteriovenous malformation (AVM). She was sent to the pediatric ICU and had many additional tests and procedures.

According to the Mayo Clinic website, "A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain. The arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process. An arteriovenous malformation can develop anywhere in your body but occurs most often in the brain or spine. Even so, brain AVMs are rare and affect less than 1 percent of the population. The cause of AVMs is not clear. Most people are born with them, but they can occasionally form later in life. They are rarely passed down among families genetically. Some people with brain AVMs experience signs and symptoms, such as headache or seizures. AVMs are commonly found after a brain scan for another health issue or after the blood vessels rupture and cause bleeding in the brain (hemorrhage)."

It has now been over 3 years since Cassidy's AVM. Recently, in March 2015, she had another surgery and got really good news that her AVM is still there but the treatment has worked successfully.

Cassidy said, "I am very thankful to be here right now and will be forever thankful to the medical staff, family and friends for all of their support!"

She added, "Since I am old enough now to share my story, I hope that it will help other people who have gone through what I have."

In addition to telling her story, she has joined the AVM Awareness Organization of the Greater Buffalo Area to help increase AVM awareness. The AVM Awareness Organization of the Greater Buffalo Area is dedicated to informing the public about the effects of arteriovenous malformations and is devoted to the support of patients, families, and others affected by an AVM.

To help increase AVM awareness, Cassidy is planning a Dance-a-Thon on April 17. The event is open to the public and will take place at the Westfield Moose Lodge, from noon until 5 p.m. There will be a DJ playing music, along with door prizes, a Chinese auction, and 50/50 raffles. Her goals for this event are to help increase awareness, help people who also have an AVM, and to raise as much money as possible. Proceeds will be donated to Gates Vascular Institute and Women & Children's Hospital in Buffalo. Registration and pledge forms may be obtained by email at avmdanceathon2016@yahoo.com

Cassidy's aunt and president of the Westfield-Mayville Rotary Club, Adele Harrington, commented, "Cassidy has been a guest speaker at one of our weekly meetings, and did a fantastic job. There wasn't a dry eye in the room! She is ready to get the word out regarding this life-threatening condition and sharing her own story is good for her, and could make a significant difference in the lives of so many other families who have experienced what ours has. We are extremely proud of Cassidy and the inspirational young girl that she is! Our Rotary Club was so moved by her ambitions that we have contributed a monetary donation to her event as well."

The energetic 10-year-old added, "The community support has been amazing and is so important to me. I cannot thank everyone enough-businesses, organizations, friends, and family! If you are able to provide a monetary donation, I thank you in advance for your donation. Thank you so much for your support!"

For more information or to offer support for Cassidy's AVM Awareness Dance-a-Thon or the AVM Awareness Organization of the Greater Buffalo Area, please contact: Jennifer Phillips 716-269-9427, Janet Greene at 716-581-3875, or Harrington at 716-581-0265.

 
 
 

 

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