There's something incredible about the miracle of a child defying the odds. Watching Briar Rose's life has truly been a miraculous journey. There are somber times watching her struggle to breathe; her ribs, throat and sternum sucking in so hard just to get a breath and fighting to make those lungs work. Something so simple, breathing in and out, that we take for granted. As an infant, trying to get her to eat, desperately trying to get her to gain weight, but indeed she didn't have the coordination to swallow and she was silently aspirating into her lungs. There were hundreds of temperature checks that taught us to know her temperature by the kiss to her temple. There were times her skin was so hot touching her felt like we were burning. The learning of medical jargon, tube feeds, calorie counting, the cords, breathing equipment, wires, and terms and vocabulary. The blood draws on tiny veins that became routine hoping these tests would give us answers. Knowing that almost every system of her body is affected, from spine and skull to learning and behavior. The doctors and therapies that fill our lives.
Briar Rose has Wiedemann-Steiner Syndrome and Periodic Fever Syndrome, two rare conditions that affect almost every facet of Briar Rose's life, health, and development.
For Briar Rose, Wiedemann Steiner Syndrome means that because of her feeding and growth issues she needs a g-tube for nutrition support. She gets frequent respiratory issues causing severe distress. Her immune system tends to overreact causing frequent fevers. She has lots of little deformations in her little body like fused vertebrae, misshaped skull, early teeth and mouth abnormalities, vision, and more. She also has developmental delays and speech issues and will have learning disabilities throughout her life.
One of Briar Rose's favorite places to go is to visit her doctor friends at the hospital. Briar Rose sees 8 specialists that help her grow, develop, and live her best life. Because Wiedemann Steiner Syndrome is rare, there is very little information for doctors. We are so blessed that Briar Rose's doctors have been willing to learn right alongside us and that they genuinely listen to our concerns and are always there to support and help her. Sometimes that looks like testing and procedures and not giving up finding answers. Sometimes it’s being there during fever flares. Sometimes it's extensively going over treatment options or late night phone calls to walk us through respiratory issues, and countless others things.
These issues have caused Briar Rose to be in the hospital 10 times, have dozens of ER visits, therapies, countless procedures and one life flight. Through all of these things we have been blessed with beautiful medical staff and nurses who are thorough and vigilant. We were graced with a life flight team that has superpowers and we watch for them often in the skies as Briar Rose waves to her "helicopter friends".
Because of a care team that listens and goes above and beyond the call of duty, and a community of Wiedemann Steiner and Autoinflammatory parents across the world, Briar Rose is able to have a beautiful quality of life and although her life is defined by her medical issues, she doesn’t let that stop her or slow her down. Her little body won't grow and at almost 4 she is the size of an 18 month old. But her spirit is timeless. Briar Rose is a miracle. She has light and happiness. She perseveres through each hard little thing her body throws her way. She is an example to me. Through it all we have been witnesses to miracles. We have been touched by angels. We have seen strength in this tiny child and our family has been blessed.
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