For the 6th year in a row, I am proudly participating in a fundraising walk for Boston Children's Hospital. On Sunday, June 11, along with several family members, I am walking 7 miles in Boston for 'Team Annie's Army,' to support my youngest daughter, Annie, as well as numerous doctors, nurses and staff who continuously exceed our expectations while providing ongoing care for her rare, undiagnosed auto-immune condition.
Meet Annie: A social, outgoing, happy, fiesty, talkative, sweet, friendly, smart, caring and loving 6 year old kindergartener, who loves her family, especially big sister Lucy! Annie delights in playing 'doctor' with her family and friends, setting up her Calico Critters, building Friends and American Girl Lego sets, playing 'school' with Lucy, coloring, swimming, playing outside, and reading Elephant and Piggie, Henry and Mudge and Annie and Snowball books. Her learning and communication skills continually grow and develop. Annie played Basketball for the Saco Rec program this past winter and made several new friends. She participates in a local ballet class and is a Girl Scout Daisy where she participates in activities that let girls have fun and learn about themselves and the world. Annie loves kindergarten! She has an amazing teacher who embraces the spirit and spunk that Annie brings to school each day. Annie has gained the courage and skills to be able to confidently and independently participate in many new activities. With her tremendous energy and tenacity, Annie loves to give to others and make people smile.
Annie's journey at Boston Children's Hospital started on April 2, 2012. Her medical conditions are inflammation based - effecting her joints, skin, eyes, hearing, and heart. Annie has had numerous surgeries and countless tests but it doesn't stop her drive to be one amazing little girl. 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 over 4 years, a true miracle that has 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, something that was acquired, she was not born with. 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, 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. Last July, Annie had 2 stents placed into her aorta. This was followed up in December, by inserting 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 continues to suffer outbreaks affecting her skin and occasionally her eyes and joints. Over the past 2 years, the frequency of these flares have decreased, which is very positive. She is on several daily and weekly medications to reduce the inflammation. 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 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 is our strong, fearless, resilient, free-spirited, little girl who adores her family and many friends. Her smile is contagious and her personality infectious. Annie is my reason for walking. Please consider joining my team or donating to Team Annie's Army. Boston Children's Hospital is a blessing to us. We are fortunate to live so close to this amazing facility and its world renowned reputation and staff.
I walk for research and faith, not only for Annie, but for others as well: the numerous families and patients in Maine and the Northeast that we have connected with the past 6 years on this continuous journey. Finally, I walk in gratitude for the extraordinary hospital and for the professional and tender care it gives to its young patients and their families. While it is not something we ever expected 6 years ago, we are happy to be part of the Boston Children's family. Please help Annie and other kids beat the odds and shine!