On June 9th, I am participating in my 8th consecutive fundraising walk for Boston Children's Hospital. Along with John, Lucy, Annie and several family members and friends, I am walking 6 miles along the Charles River in Boston for 'Annie's Army,' supporting my youngest daughter, Annie, as well as the doctors, nurses and staff who continuously exceed our expectations while providing ongoing care for her rare, undiagnosed auto-immune conditions. Annie has been blessed with an amazing support system, that includes, friends, family, doctors, nurses, teachers and strangers. Many of you know her unique, complicated, 'one of a kind' story. The story starts and ends with Boston Children's Hospital. They are a constant in her life. The hospital has given Annie a chance to live her life as fully as possible.
Meet Annie: An extremely energetic, spirited, fiesty, happy, ‘fighter’, talkative, friendly, smiley, caring and loving 8 year old 2nd Grader who adores her family and friends, especially her big sister, Lucy. Annie is an active girl who is very social and likes to stay busy! Annie played both soccer and basketball for the local Saco Rec program. Additionally last fall, Annie was a member of the Manta Rays, our local YMCA swim team. She participated in several swim meets and the YMCA State Championship in March - very exciting as she got to practice and swim alongside Lucy and friends. This is Annie’s second year singing for our church’s youth choir with support from a wonderful teacher, Mrs. Marston. Just 6 years ago, Annie was profoundly deaf and only able to communicate via sign language - now she’s singing at church! Annie is a Girl Scout Brownie. This program has allowed Annie to meet new peers from surrounding schools and participate in activities that let girls have fun and learn about themselves and the world. 2nd grade is an exciting year for Annie. She is in a multi-age classroom with both 1st and 2nd graders. She brings spirit, enthusiasm, care and spunk into the class. Annie couldn’t be happier that she has her teacher, Miss Holland, for a second year in a row! From entertaining with her American Girl and LOL dolls, walking around with her grandmother’s Camino backpack pretending she is on the Amazing Race, playing school, riding her bike, playing card and board games with Lucy, or simply being silly with friends, Annie’s zest for life is evident every day. Her smiles are contagious and her courage allows her to try new skills and activities that enrich her life.
Annie’s journey with Boston Children’s Hospital began 7 years ago, on April 2, 2012. During this time, we have developed many solid, lasting relationships with doctors, nurses and staff along with connecting with other families who benefit from care at BCH. Annie’s condition is inflammation based and has affected her joints, skin, eyes, hearing and heart. In March of 2013, Annie was given the gift of hearing in her right ear through Cochlear Implant surgery. Six months later, it was followed up by another surgery for her left ear. Annie has now been hearing and talking for 6 years - a true miracle for Annie and our family. Dr. Mary Beth Son, Department of Rheumatology, is an outstanding, caring physician that leads Annie's specialized team. Annie also regularly sees specialists in Ophthalmology, Audiology and Cardiology.
Over the past few years, I started 'walking with purpose,' a specific theme unique to each year. This year I will be walking for gratitude of the nurses in the CAT-CR. Over the past 7 years, Annie has had about 150 outpatient visits to these specific nurses on Farley-4, and currently sees them every 3 weeks. Annie’s face lights up when she walks into her appointment and peeks around the corner to see which nurse will be taking care of her. I am grateful for the smiles, hugs and welcome arms Annie receives each visit. The nurses are part of our ‘family.’ Several of them have known Annie since she was 1. They remember wrapping her like a bean burrito to give her an IV. They learned basic sign language to communicate early. The nurses shared in Annie’s joy of walking at 18 months as well as her successful cochlear implants surgeries at age 2. Even special messages and visits while Annie had 2 inpatient surgeries for her stents. They rejoice in her non-stop chatter and long-winded stories every single visit. These unique, caring, loving and important nurses always make Annie feel special. What I have learned over the past 7 1/2 years since Annie’s health changed is that her life, although challenging, complicated and scary, is full of happiness. These nurses play a huge part in that happiness. They have embraced Annie and our family. Despite the long driving days, these nurses are why we travel from Saco to Boston to receive treatment. They are Annie’s comfort and her constant. The nurses love their jobs and it is reflected by the amazing connections with Annie. I am proud and grateful to not only call them Annie’s friends, but my friends as well.
I walk not only for Annie, but for so many others as well: numerous families and patients in Maine and the Northeast we have connected with the past 7 years. I lovingly walk for Andrew, my 1 year old godson, who also is followed and cared by specialists at Children’s. Finally, I walk for appreciation of the extraordinary hospital and the professional and tender care it gives to its young patients and their families. While it is not something we ever expected 7 years ago, we proudly can say we are happy to be part of the Boston Children’s family. Please help Annie and other kids beat the odds and shine. Please consider joining my team or donating to Team Annie’s Army in my effort to give back.
With love and gratitude - Lindsay