This is 10! Meet Annie - an energetic, carefree, swim-loving, choir-singing, personable, talkative, caring, soccer-playing, iPad crazy, happy, active, spirited, loving 4th grader. She is little sister to Lucy who she looks up to in so many ways. For those not familiar with Annie's story, I hope to provide a glimpse of Annie's continually unfolding story, showcasing the importance of Boston Children's Hospital to our family and why we passionately fundraise year after year. Team Annie's Army is 10 years strong!
Starting at 6 months in 2011, Annie began developing several inflammatory symptoms, severly effecting her eyes, joints, hearing, skin and eventually heart. With no conclusions, diagnosis or successful treatments, at 14 months, Annie was treated and subsequently admitted to Boston Children's Hsopital. After two immediate lengthy inpatient stays, doctors still had no answers. Auto-immune conditions are out of the box, and the drugs and treatments the hospital used were not helping her longterm. From test after test, procedure after procedure to rule out various serious conditions, being brought up at national and international Rheumatology conferences, and seen by numerous specialists, Annie was always a puzzle. Even 9+ years later, Annie is still rare and undiagnosed. There is truly no one like her.
Annie has a combination of two extremely rarte auto-immune conditions, Cogan's Syndrome and Sweet's Syndrome. In addition, in 2016, it was discovered that Annie had a narrowing of her aorta (something taht had probably happened years earlier), another exceedingly rare condition called Midaortic Syndrome. Test after test, procedure after procedure, MRIs, CAT scans, PET scan, back and forth to Boston upwards of 30-40 times a year, and surgery after surgery was Annie's normal early life. Annie's inflammation caused rashes that ulcerated, photophobia, vision problems, Juvenile Rheumatoid Arthritis, a narrowing of her aorta, and left her profoundly deaf. Steroids, powerful chemotherapy drugs and other medicines that suppressed her immune system, to immunoglobin that boosts her immune system, Annie has tried it all. There is no immediate 'cure' but the medical specialists and doctors continnue to be interested and vested in Annie. Thankfully Annie was a candidate for Cochlear Implants, which opened a whole new world to both Annie and our family. At age 2, we started the cochlear implant surgery process. Because of the fragility of Annie's body, she needed 3 surgeries to somplete the bi-lateral implant process. And wow, were those successful surgeries with our now non-stop talker! Wehen Annie was 5 and the narrowing of her aorta was discovered, she had 2 stents placed in July 2016. A 3rd stent was placed when Annie was almost 6. Annie's medical journey is on-going, always changing, but she is one adaptable kid!
Annie is rare, no one else is like her. She is the kind of child that benefits from extensive research and development. Doctors are constantly puzzled by Anniue. They are actively searching for the missing piece of her puzzle. We have to hope that medical experts and doctors will continue to research to develop a long term treatment plan to help Annie live a life full of possibilities.
While this is not the path we envisioned or expected for Annie, we are grateful to live within 2 hours of Boston Children's. Since there is no one like Annie, I rely on peers who have kids that have experienced only one of Annie's 3 main conditions. No one knows what it is like to have all 3. I do my best to provide support to others when I can. But most importantly, kids like Annie rely on the research that is constantly being analyzed by medical experts. They do want to figure Annie out. They want to see her thrive, prosper and live the most normal life possible. Research and development help Annie live the most outwarly normal life possible. Annie has a zest for life, an effect on others around her that make her who she is. Boston Children's and their compassionate and professional care, continue to give us hope that things will 'be ok' and they will further help navigate the challenges and bumps in the road.
To show out outmost appreciation and gratitude to the doctors, nurses and staff at Boston Children's Hospital, we participate in the annual Eversource Walk. It is our way of giving back to an amazing hospital that continually provides Annie with the best doctors, medicines and research. This year's 2021 Walk will again be virtual/local. Annie's Army successfully completed it walking in our Saco neighborhood last year with family and friends. We look forward to safely doing it again this year. We aim to walk the weekend of June 12th - weather and sports permitting. If not, we will sneak it in the weekend after. Please help me make a difference by giving back to Boston Children's. In that it is our 10th year walking, I've set a high goal of raising $10,000. This walk celebrates Annie, the thriving child she is, all while giving back!