Greetings Family and Friends,
Wow - hard to believe this is my 7th year in a row walking to fundraise for Boston Children’s Hospital. On Sunday, June 10th, along with John, Lucy, Annie and other members of Annie’s Army, I am proudly participating in a 6-mile fundraising walk for Boston Children's Hospital. We walk to support my youngest daughter, Annie, as well as doctors, nurses and staff who continuously exceed our expectations while providing ongoing care for her rare, undiagnosed, ‘the only one in the world' auto-immune condition.
Over the past few years, I have started 'walking with purpose,' a specific theme unique to each year. This year I will be walking for acceptance and happiness. Acceptance for me that Annie is different, will always be different and that she is unique, according to doctors, there is no one in the world like her. Acceptance that her future and life is full of unknowns. Being able to accept and recognize that we have so much love from family and friends to support our family when times aren’t always easy. What we have learned over the past 6 1/2 years since Annie’s health changed is that her life, although challenging, complicated and scary, is full of happiness. Happiness that Annie loves life; she loves her friends, neighbors and especially her cousins and family. Happiness that Annie lights up the room for others. Annie leaves an impression on so many, which I can only smile about. Our ‘family’ of doctors and nurses that often brighten our day during appointments - especially her besties in the CAT-CR that make her feel loved every time she turns the corner on Farley 4. The ability for Annie to embrace school, friends, activities, holidays, traveling adventures, all joys of typical children, brings me immense happiness and gratitude. Sisters, Lucy and Annie, two years apart, that share a special bond of each always looking out for the other, make my heart full.
Meet Annie: An extremely energetic, full of life, happy, talkative, sweet, friendly, smiley, caring and loving 7 year old 1st Grader who loves her family and friends. Annie especially adores her big sister, Lucy. The past year Annie has tried new activities and has grown into a little girl who is very social and likes to stay busy! After a wonderful summer of swimming at the beach and in pools, Annie started private coaching swim lessons, something she enjoyed and thrived at with her Coach Buddy. Last fall, Annie played soccer for the Saco Rec program, followed by basketball in the winter. She hopes to join the local YMCA swim team in 2018. Last fall, Annie joined our church’s junior choir (which Lucy also participates in). This has been especially emotional and gratifying for John and I. To think that 5 years ago Annie was profoundly deaf, could not talk and had just been newly implanted with her first Cochlear Implant, to skip forward and Annie want to sing in the choir, give us more joy than you can imagine. I will never forget the day last fall when Annie first sang at church - that day is forever etched in my mind, seeing her with Lucy, full of smiles when she sings and very animated! Annie simply adores her choir teacher, Mrs. Marston. Annie participates in Girl Scouts, as a second year Daisy. 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. 1st grade is an exciting year for Annie as she is in a multi-age classroom with both 1st and 2nd graders. She brings spirit, enthusiasm and spunk into the class. Annie couldn’t be happier that she has her teacher, Miss Holland for 2 years in a row! From reading chapter books, playing doctor or teacher, riding her bike, playing games with Lucy, or simply being silly with friends, Annie’s zest for life is evident every day. Her smiles are contagious, her determination and persistence simply make her who she is, and her courage allows her to try new skills and activities that enrich her life.
Annie’s journey with Boston Children’s Hospital began 6 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 medical conditions are inflammation based - effecting 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 CI surgery for her left ear. Annie has now been hearing and talking for 5 years, a true miracle that has immensely blessed Annie and our family. Dr. Mary Beth Son, Department of Rheumatology, is an outstanding, caring physician that leads Annie's specialized care. Annie also sees specialists in Ophthalmology, Audiology and Cardiology. 2016 brought several new cardiac related challenges for Annie. Each one was faced head on with optimism, faith and determination. During the spring of 2016, it was uncovered by accident that her aorta had narrowed at some point in her young life. After several tests (EKG, ECHO, CT-SCANS, and a PET-DECT scan) and in consultation with numerous cardiac specialists, it was discovered that Annie has mid-aortic syndrome, an extremely rare condition that is difficult to diagnose. We are fortunate enough that the best doctors in the world that specialize in this condition are located at Boston Children's. Annie will likely need bypass surgery as a young adult to address this condition. Due to her age, however, Annie’s cardiologist, Dr. Porras determined that using stents to expand her aorta was a safer option until she is fully grown and in a better position for the full surgery. In July, 2016, Annie had 2 stents placed into her aorta. This was followed up in December 2016, with a 3rd stent. With frequent and careful monitoring and follow-up, we hold out hope that the stents will suffice until surgery is required later in life. Annie has had numerous surgeries and countless tests but it doesn't stop her drive to be one amazing, determined little girl.
Annie continues to suffer outbreaks affecting her skin and occasionally her eyes and joints. Over the past 3 years, the frequency of these flares have decreased, which is very positive. She is on several daily and weekly medications to reduce the inflammation in her body. She also continues to receive an infusion of a drug called IVIG every 3 weeks at the outpatient center at Boston Children's, the CAT-CR. The nurses there are Annie's 'family' away from home. She looks forward to seeing these special people on infusion days as they welcome her with open arms, smiles, and graciousness. These are long driving days, but Annie always feels loved when she walks down the hall and spots her favorite hospital friends. The staff at Boston Children's loves their jobs and it is reflected by the amazing connections they make with Annie and other patients. The positive impact and care these dedicated nurses and Child Life Specialists exhibit to all of us make the visits so much more enjoyable.
Annie’s smile is contagious and her personality is joyous. Annie is my reason for walking. She is a strong, fearless, determined, resilient, free-spirited, happy, and caring 7 year old, little girl. We owe our thanks and gratitude for Annie’s thriving life to Boston Children’s Hospital. BCH is a blessing to our family. We are extremely fortunate to live so close to this amazing facility and its world renowned reputation and staff. This year I walk for acceptance and happiness. I walk not only for Annie, but for others as well: numerous families and patients in Maine and the Northeast we have connected with the past 6 years on this continuous journey. Finally, I walk for gratitude for 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.
With love and gratitude - Lindsay