Rosalee "Rosie" Jane Hansen is an inquisitive, intelligent, genuine, beautiful, caring and very BRAVE and COURAGOUS 11-year-old girl! She is passionate about exploring the sights and sounds of nature...specifically fishing, birdwatching and agate hunting! She has always had such an innate ability to truly see the beautiful details out in nature...no matter the reason nor the season! "Rosalee" originates in Latin and means "rose blossom" and "beautiful rose" and is such a perfect depiction of this beautiful rose blossom little lady that we all admire and love! In January of 2024 Rosie's courageous journey began, and she hasn't stopped fighting! She started complaining about her right rib cage feeling "weird". After a trip to the chiropractor, they learned that she had mild scoliosis (her spine had a curve to the right side) and her right ribs would go out of joint sometimes. Within a few months, Rob and Christy noticed that Rosie's upper spine was starting to bulge outwards. After more chiropractor and doctor visits, she was diagnosed with severe thoracic kyphosis (curvature of the upper spine causing a "hunchback" appearance). Her spinal cord was also pinched. After reviewing some of Rosie's X-rays, her doctor noticed that she had opaque oval "spots" in her ribs on her right side and in both femurs. At this point, she was not in any pain (thank goodness!) and her kyphosis and these strange "spots" in her bones did not interrupt her day-to-day life. Her doctor suspected that the spots were caused by something called Langerhans Cell Histiocytosis. This disease is known to show these odd spots within bones and can be managed with a medication. On Halloween of 2024, Rosie started to lose function of her right foot and leg. A week later, she underwent a sedated MRI, CT scan and bone biopsy of one of the "spots" in her femurs. In recovery that night, her right leg and foot reflexes were so poor, that she could not stand or walk. She was admitted to St. Mary's Hospital in Rochester, Minnesota. The next day she underwent urgent surgery to decompress her spinal cord. During the surgery, the surgeons noticed that her bone quality in her thoracic vertebrae was poor. The most affected vertebra was T7. They removed this bone and sent it in for analysis. A cage was put around her spinal cord where T7 used to be and the doctors performed a fusion with rods and screws from T5 to T11! Rosie's spinal cord was successfully decompressed! Rosie's recovery was incredible! She regained full function of her right leg and foot and her back was much straighter! In the weeks after her surgery, the results from her femur spot biopsy came back as negative for Langerhans. This was great but it left them all with a mystery! In January 2024, the test results from her T7 vertebra came in. Rosie was diagnosed with Gorham-Stout disease. This disease is extremely rare (approximately 300 cases are known world-wide) and causes her lymphatic system to eat away at her bone marrow and replace it with lymphatic vessels. It is not curable, but it is treatable. This diagnosis answered a lot of questions about her soft vertebrae, her right ribs feeling "weird", and what was causing the spots in her bones. Since the diagnosis, Rosie has been taking a medication to stop/slow the progression of the disease and there hasn't been any detectable advancement of the disease since she started on her medication. With that being said, during the end of winter/start of spring, we noticed that Rosie's back had started to round out again and her kyphosis was returning. MRIs and CT scans showed that her thoracic vertebrae never fused due to the Gorham-Stout disease. Her surgery had failed. Rosie still wasn't in any pain and was able to function normally. In May 2024, we noticed that Rosie was walking differently, and she was experiencing numbness in her right leg. In June, Rosie received an infusion of a medication to build and strengthen her bones. After examining her, the doctor suspected that her spinal cord was pinched again. This was later confirmed with CT and MRI. The doctors scheduled her for surgery on August 2nd, 2024. On the 26th of July, Rosie had pre-surgery tests and surgeon consultation where we received some pretty sobering news. We have to proceed with surgery or Rosie will end up paralyzed at some point in the future as her spine continues to collapse and increase the pressure on her spinal cord. However, this surgical procedure is high risk for paralysis. The plan is as follows: -Remove all the rods, screws and cage around her spinal cord. -Remove two additional vertebrae -Place a new longer cage around her spinal cord where the three vertebrae used to be -Replace the rods with longer and thicker ones. All of this requires the use of drills, mallets, chisels, scalpels, etc. These instruments are being utilized right next to her spinal cord. After surgery, Rosie will be on bed rest for a length of time to give her spine an opportunity to heal and fuse. With Gorham-Stout disease, this is a challenge. Her bones do not want to heal. Rosie just wants to be a normal kid. She has had to deal with more medically in the last 1 & 1/2 years than some people will ever have to deal with in their entire life. This has taken quite a toll on her mentally and emotionally. She has been seeing a therapist and is on medications for depression and anxiety. This has helped immensely. Rosie's ability to power through her day to day life her plagued with physical pain and limitations including her emotional distress are nothing short of remarkable! Rosie is a fighter who has never asked to go through this battle, but here she is....ready to climb and conquer another mountain and challenge that is in front of her. We are bracing ourselves for whatever comes next. We are hoping and praying for miracles. Please hope and pray with us. This LFEBridge has been set up to help ease the immense financial burden including but not limited to medical bills, travel from Rush City to Rochester, time off of work, gas, lodging, meals and other unforeseen expenses. Your prayers and financial support are treasured and will help Rob, Christy and Ruby be able to better focus their energy on Rosie's health and their family.
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