ToniAnn LaVecchia's Fundraising Page

ToniAnn’s Warrior Crew

Conquer Chiari Walk Across America
September 27, 2025
12:00 PM to 3:00 PM

New York, Long Island
Holtsville Wildlife & Ecology Center
249 Buckley Road
Holtsville, NY 11742

A message from ToniAnn:
Hello, my name is ToniAnn LaVecchia. I reside in Hicksville New York , I am 42 years old, mother of 4 and a wife. I was diagnosed with Chiari Malformation type 1.5 at the age of 31. Chiari 1.5 malformation is an advanced form of Chiari 1 malformation where the brainstem, along with the cerebellar tonsils, descends below the foramen magnum, the opening at the base of the skull.While Chiari 1 involves only tonsillar herniation, and Chiari II involves more extensive herniation with other brain anomalies, Chiari 1.5 includes both tonsillar herniation and some brainstem descent, causing a slew of neurological symptoms and problems. During my early diagnosis , my oldest child was battling brain cancer for the second time in her life. Along with being a mother to my son who was two years old.  My life changed for the worse, however I didn’t allow it to define me. I do my best to be positive every day regardless of the situation. My health is more than just a situation. It is my life, and it can be frightening however, I remain positive.  I strive to always do the best for my children regardless of how I’m feeling. I often shrug off my own pain, symptoms, and anxiety to give my children the best “me” I can possibly offer. This can be by being a good host for their friends, making pizza, doing arts and crafts,baking, planting, growing a garden, and much more. While I enjoy doing these activities with my children, I also never want to let them down. As of today, I have had seven brain surgeries, developed hydrocephalus after my first brain surgery, requiring another brain surgery to have a programmable VP shunt placed in my brain and catheter threaded down to my peritoneal cavity, suffered several strokes and have had many setbacks.  During this time my daughter passed away from brain cancer. She was 11 years old. I have since had two beautiful girls, one of which was diagnosed with autism who is 3 years old and my youngest daughter is 1 year old. My son who is the oldest at 13 years old helps me as much as he can. My children are the ones who give me strength.  I am looking for sponsors to understand and support this cause. This is not only for my story, but to help others, In generating awareness and educating the public about Chari Malformation 1.5. otherwise known as CM.  Chari Malformation does not discriminate. This could be you, your child, or your loved one(s) . While nevertheless, everyone’s story is different this is my story, my life. Every year for the past 11 years Ive been involved with the Conquer Chiari Walk Across America. Every September we gather for the cause in Holtsville NY. Rain or shine we make it happen. I personally donate gift baskets, make photo boards, make food, raise money to support this cause that goes unrecognized by many medical professionals and people in general , along side an amazing group of people battling all different forms of Chari Malformation. Who have now become some of my greatest friends. This is only a fraction of what it takes. Our group works hard donating their own personal time and money to raise awareness. This is not only for me , but to help others understand and to educate them. Thank you again and I appreciate the time you’ve taken to read my story.

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