It is hard to believe this is my 9th year walking to raise funds for Boston Children’s Hospital. While this year will be different with our walking virtual because of COVID-19, our family will participate in a neighborhood walk between June 6-14. Despite not being able to walk along the Charles River in Boston, we will proudly support and give back to the hospital, nurses, doctors and staff that are so valuable to not only Annie and our family, but in a time of crisis, to so many others in desperate need.
Meet Annie, a 9-year old feisty, lively, spirited, loving, caring, active 3rd grader. Here is a glimpse of Annie’s unfolding story.
Annie was born healthy - then at 6 months began developing different inflammatory symptoms, severely affecting 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 Hospital. After two immediate lengthy inpatient stays, doctors were still baffled. Auto-Immune conditions are out of the box, and the drugs and treatments the hospital used were not helping long term. Test after test, scan after scan, procedure after procedure, ruling out different conditions, being brought up at North American Rheumatology conferences, seen by numerous specialists, yet Annie was still a puzzle. Even 8 years later, Annie is still rare and undiagnosed. There is no one in the world like her, and doctors are confident she will be written up in the journal of medicine.
Annie has a combination of two extremely rare auto-immune conditions, Cogan’s Syndrome and Sweet’s Syndrome. In addition, Annie developed another extremely rare condition called Mid-Aortic syndrome, the narrowing of her aorta. Test after test, CT scans, PET scan, surgery after surgery has been Annie’s life. Annie’s inflammation causes rashes that ulcerated, photophobia (inflammation in her eyes), vision problems, Juvenile Rheumatoid Arthritis, narrowing of her aorta, and left her profoundly deaf. Steroids, chemotherapy drugs, powerful medicines that suppress her immune system, to immunoglobulin that boosts her immune system, Annie has tried it all. There is no immediate ‘cure’ but the medical specialists and doctors are so interested and vested in Annie. Thankfully Annie was a candidate for Cochlear Implants and in 2013, at age 2, her body accepted the implants (but because of rarity and all of her unknowns, Annie needed 3 surgeries to complete the implants, one to start the process to make sure her body wouldn’t reject implanted foreign objects, and then 2 separate surgeries 5 months apart, one for each ear). Then in 2016, when Annie was 5, the narrowing of her aorta was discovered and an immediate concern. Annie had 2 stents placed in her aorta that July, and then a 3rd stent placed in December 2016.
Annie is rare, no one else is like her. Annie is the kind of child that benefits from extensive research and development. Doctors are constantly puzzled by Annie. They are actively searching for the missing piece of her puzzle. We have 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.
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 pursued by medical experts. They want to figure Annie out. They want to see her thrive, prosper and live the most normal life possible. Research and development helps Annie live the most outwardly normal life possible. Annie has a zest for life, an effect on others around her that makes her who she is. As a parent, I am relying on doctors communicating not only with each other, but with other institutions, both national and international, to help Annie live and thrive with such rare diseases. Boston Children’s Hospital is a research leader.
Now, more than ever, is the time to give back and say thank you to Boston Children’s Hospital. They are Annie’s life savers. Please donate what you can. The doctors, nurses and staff are invaluable. Annie relies on them. Please help me say thank you by donating and giving back.
Thank you - Lindsay