Zahava was born first, she made me a mom, and came into the world with the mentality that she’d be first for everything. She was the first granddaughter on both sides of our family and she has continued to show the world that she will be uniquely first for anything she puts her mind to and center stage for as long as Gd continues to allow her spark to shine in this world. To that extent, long before any crazy diagnosis her personality inspires, leads and provides light to others where ever she goes. I distinctively remember her first-year monthly-check-ups; head-to-toe checks and those lengthy questionnaires about the baby’s development. Everything she did was “advanced” and “above average”. I didn’t question a thing- except for the strange red birth mark on her right toe. Every appointment I asked the pediatrician if it was normal and was reassured it was “just a birth mark” or a “port wine stain” they called it. I continued to ask each year. Something just didn’t feel right about it, but I was always reassured that it was “just a birthmark.” It was “normal” or at least until Zahava was 7 years old and going in for a routine tonsillectomy. Moments before the surgery, nurses came to take her back to the OR, and as Zahava was climbing into the hospital bed she stubbed her right foot on the wheel of the bed. She was crying so loud that everyone on the floor could hear her and NOTHING could console her. The nurses kept promising toys and rewards and pain meds but nothing could calm her down and no one could figure out how stubbing her toe could make her have THAT much pain. Eventually they were able to get her calm enough to take her into the OR and after about an hour the ENT came out to say the surgery had gone as expected but that we really should get her foot x-rayed because she probably broke several toes. Since Zahava was on pain meds for the next 2 weeks while home recovering from the tonsillectomy, we forgot about the broken toes. Finally, the day when she was ready to go back to school, she was getting her shoes on and started screaming out to me “mommy my shoes won’t fit on, my foot is too big” that’s when I remembered the broken toes and that we needed to go for X-rays. What the X-rays revealed however was not broken toes but a mass growing in her foot and the radiologist was convinced we needed a dermatologist because of her birthmark “port wine stain” on the exact toe she had stubbed. A few weeks later when we finally got an appointment with the dermatologist we were told that we were at the wrong type of doctor and needed to go to an oncologist because the mass was most likely cancer. At that point I began panicking - like any mother would have done-thinking of all the horrible things that could go wrong with my child. But thank Gd when we finally got to the oncologist a month later, he took one look at the X-rays and said very confidently that it was not cancer. He then referred us to an Interventional Radiologist at the children’s hospital who finally made the diagnosis of Arterior Venus Malformations, AVM's. A diagnosis that effects 18 in 1 million. A diagnosis so horrible that we were told it was better to be diagnosed with Cancer. Since AVMs are so rare to begin with, but manifesting in a foot are even more rare it was a hard diagnosis to confirm. It made sense that we had been thrown around to several doctors. During these few month’s Zahavas foot had swollen so badly that she could no longer wear shoes. She had been given a walking boot by the ER and could barely get comfortable enough to put weight on that foot with the boot on. She was trying to be a kid but slowly her childhood was being taken from her. When we finally met with the IR doctor at the children’s hospital he explained what exactly an AVM was and after an initial angiogram discovered that the mass in Zahavas foot was actually a cluster of 5 AVMs throughout her foot and toes, the plan was to embolize the 3 larger ones to try to control their growth. However, there were 2 smaller AVM's that were 2 small to touch for fear or cutting off blood supply to her foot. We’d have to wait until Zahava grew more to operate on those. After embolizing the 3 she seemed to be doing ok (despite still not being able to wear shoes or walk normally) until one day a few months later when she started complaining of pain again. We went back in for some more scans to see the cause of the pain and it seemed that although the blood flow was stopped to the 3 larger AVMs the blood redirected itself and created new flow into NEW AVMs. She now had 10 AVMs instead of the initial 5. The plan was to go back in and embolize the larger ones again. This process of embolizing the new growth of AVMs occurred almost every 6 weeks for 3 years, each time with more reoccurrence of new AVM's. During that time it was COVID and Zahava had been in 3 different schools because her anxiety over her medical condition was making it difficult for her to perform academically. Finally, the IR doctor presented us with a new trial drug for kids with her type of AVM. It was an immunosuppressant drug, Sirolimus and she’d now need to be monitored by an oncologist. Zahavas blood pressure and lipid panel went crazy from being on the Sirolimus but those seemed like small prices to pay to manage the AVMs and not have surgeries every 6 weeks. Zahava was on the sirolimus for a year with no surgeries and we truly thought it was our “miracle drug”. She was able to wear crocs (not any other shoes) and she could sort of limp around as opposed to wearing a walking boot. About a year into taking the Sirolimus, the skin on her foot started breaking down and becoming ischemic and ulcerated. So ischemic, that she began needing daily wound care, and again couldn’t walk on her foot and eventually neededa knee scooter to get around. She would hobble around the house on the side of her foot but definitely couldn’t wear shoes and definitely wasn’t able to live a normal 10 year old life. It was then that our team of doctors at children’s hospital in Chicago suggested we go to CHOP in Philadelphia because they have a specialized Vascular Anomaly Program that focuses all their time on kids with AVMs. The oncologist who heads the team, Dr Denise Adams has been the head of oncology at CHOP, Cincinnati, Boston and even has privileges at even more hospitals for many years and she is affectionally known as the “mother of all oncologists”. She was in the middle of putting together a plan for Zahava my daughter oving forward and had intentions of presenting it to us at our next appointment. Then one Friday afternoon Zahava walked into my parents house in New Jersey (we were visiting them so we could go to our appointment at CHOP) and my father noticed some blood coming out of her sock, she looked down and proceeded to pull her sock off. Upon pulling her sock off blood began squirting out faster than anyone could control. Hatzalah was immediately called and Zahava was quickly airlifted from my parents home in Lakewood to CHOP in Philidelphia - an hour and half flight. By the time we got to the hospital she had a tourniquet on and they informed me they might need to amputate if the bleeding didn’t stop when they removed it. Thank Gd the bleeding did stop but she was on permanent bed rest and now a grade 4 AVM patient. It was apparent that she was going to have more arterial bleeds and something drastic needed to happen in her treatment plan. That was when Dr Adams presented us with our options, a little sooner than she had anticipated. She told us that the Sirolimus had actually done more harm than good, and what looked on the surface like a “cure” was actually making the AVMs grow bigger. She told us that there is a new trial drug, Selumetnib a targeted therapy (basically radiation in pill form). She said that the AVM world has seen great results when given Selumetinib at the onset of new AVMs anywhere in the body, but that it wouldn’t be wouldn’t be able to cure or heal the old ones. Basically, the only thing to do at this point was to amputate Zahavas leg and THEN have her take the Selumetnib for about 6-8 months post the amputation to try to “retrain” her brain to not create new AVMs like it had done in the past. Now Zahava is almost 12 years old. She had her amputation just 5 months ago on January 4, 2023. She was diagnosed with AVM's in April of 2018 and she started this new drug, Selumetnib in April of 2023. We are hoping her future is bright but it has been a long miserable journey and we count our blessings everyday that although her journey was bumpy at least her AVMs were in her foot and not her brain like most diagnosed with this awful disease. This summer, I am excited to take part in Tour de Simcha, an exhilarating 40-mile cycling event benefiting the children and families of Chai Lifeline. Every mile I ride and every dollar I raise will help support more than two-dozen essential programs for more than 5,900 children and families (like ours) confronting pediatric illness, crisis, and loss. These critical services include counseling and case management, meals delivered to hospitals and homes, transportation to medical appointments, emergency financial assistance, insurance advocacy, i-Shine afterschool programming, Big Brothers/Sisters, trauma and crisis intervention, and Camp Simcha, Camp Simcha Special, and Camp Simcha Without Borders, Chai Lifeline’s flagship summer programs for children with life-threateningandlifelongillnesses. Life for a child with AVM's, cancer, disability, or other serious illness is grueling. From the moment of diagnosis, Chai Lifeline’s dedicated staff and volunteers are there to provide joy, hope, and unparalleled care throughout the turbulent medical journey. My objective is to raise $3,600, and I hope you will help me reach this goal. All donations are 100% tax-deductible. Please contribute generously to this important cause by clicking on the donate button now. On behalf of the children of Chai Lifeline, thank you for your support. Adina