Sarah Mize, You are greatly missed.
Hello, from the Mize Family. We have lost, Sarah Jane Mize, a beautiful light in our lives, age 19 on Friday, December 16. This came about after a long summer of illness and a final 2 week stay in the CCU at Virginia Beach General ending in Cardiac Arrest due to AOSD (Adult Onset Stills Disease). We did not leave her bedside once and cherish every last moment with her. However we never imagined such an ending could ever happen.
To know Sarah was to experience her. We in her home loved every minute with her. That included her Mother, Brenda and Father, Jeffrey, Older Sister, Jenda, a Grandmother she called G-ma, a Dachshund mutt named Augie and a Bearded Dragon named DiAnne
Below is a brief Personal and Medial history. Bottom includes links to read more about the 2 rare conditions Sarah had.
PERSONALLY: She meant so much to everyone who knew her. She was a beautiful, funny, smart and talented young woman that had her whole life ahead of her. She was a Family Girl through and through. She spent most of her time with her family. She was antisocial media most of the time. She never spent the night with other girls or went to camp. She even got mad at me when she was 6 for “abandoning” her at VCB for half a day. She was homeschooled her entire school life. She was with us 24/7 99% of here life. She would even go on boring errands with G-ma and mom. Sarah loved all types of music, dancing, singing and acting. She loved all animals and could not pass a pooch without giving it love, The Moon, wolves, nature were close to her heart. She collected Nutcrackers at Christmas, loved the Bohemian style for her wardrobe, collected vinyl records and played them on her turntable. She dreamed of her own home filled with a 70’s style. She had so many books she did not have enough room for them and had read 80% of them. She completely loved her job teaching children about the arts, singing, dancing, and acting. She found out at 14 she medically was unable to have children of her own so her students became “My Kids.” She loved them all and always wanted them to feel important and loved. From a young age to final day she would swing on her childhood swing at night when the moon was out and sing to her hearts content. The Neighbors called her the ‘Swinging Song Bird.’ she for years took private lessons in guitar, piano, song writing and singing. She was as near breaking in to the public with her abilities. She wanted to be. a ‘Star’ Those who knew her knew she was ready. There is not enough room in the world to write how much she meant to us or how much she was loved.
MEDICAL STORY: Sarah was 6 weeks premature with low white blood cells but she formed them on her own and was able to come home on time. Sarah was smaller than her peers but was not alarmed. Over younger elementary years she was sick at least 2-5 times a year with various normal things just more often. On her 14th Birthday she was diagnosed with Turner Syndrome. ‘TS’ is a chromosomal condition that only affects females. It is a rare disorder and only about 1% of pregnancies with TS girls result in a live birth. So Sarah Jane being born was a miracle in itself. She accepted TS with stride, like she did everything. Next began daily growth hormone shots and hormone replacement medication as well as many tests of her eyes to her heart. She did fare those 3 years well and grew a bit and was checked as healthy. They said she allergies to medications, and products (all makeup and lots of soaps) and her numerous illnesses through the years was counted as a low immune that would improve with age and sensitivity to medications and products that caused allergies. She accepted it as Sarah always did with everything handed to her. Nothing ever stopped her. If she could get out of bed she was ‘Living.’ She was full speed ahead toward her goal.
Early 2016 Sarah began to fight Fatigue, random fevers, sore throat. As the summer approached she counted it as the summer heat and early morning camp days. It continued through the fall but escalated just before Halloween. She began a journey of migraines, complete body rash that was not normal, trouble taking a deep breath, and muscle soreness and weakens. This rendered her unable to even raise her head without assistance. After 3 trips to the ER they thought it was a virus, pneumonia or even allergies to medication. On the 4 trip to the ER they admitted her into the CCU. She had a team of 8+ doctor/specialists. Ranging from a Infectious Disease Doctor (who knew) to a Hematologist to a Cardiologist. For 2 weeks they struggled to keep her fever below 101, fluid from collecting in her lungs, heart and limbs, while trying to get her heart rate below 150 while restricted to her bed. (Normal rate is 60-100) The days were filled with Specialists arriving sometimes on top of each other. Drawing Blood every 4-6 hours (around the clock), Radiologists, Echocardiograms. Among the worst were the procedures extracting fluid buildup from both her lungs through large needles they insert through her back and Bone marrow biopsy through her lower back. They tried to remove the fluid gathering around her heart two times through a large needle extracting it. That did not help so they performed a Pericardiocentesis, which is a tube inserted into the lining of your heart that leads to a catheter bag on the outside of your chest. Yes, she could see the fluid that was draining into a bag that was pinned to her hospital gown. All the while she was still struggling with fevers, highly elevated heart rate and extreme fluid buildup in her legs, arms, wrists and especially her feet. We could not find a pair of socks to fit her feet they were so filled with fluid. And the body covering rash came back again. By now all the tests came back negative for any Virus, Infection, Cancer, even rare ones, Blood disorders and the list goes on and on and on and on of the tests they took. They knew they had to remove the fluid from around her heart. So they took her in to do a pericardial window. (A pericardial window is a procedure done on the sac around the heart. Surgically removing a small part of the sac lets doctors drain excess fluid from the sac.) When they put the window in her precious heart she went into Septic Shock and as a result she went into Cardiac Arrest. They put her on a breathing machine and performed CPR for 50 minutes. But her heart would not beat alone.
Sarah passed on due to Cardiac Arrest. . due to Septic Shock.. . Due to AOSD (Adult Onset Stills Disease) A very Rare Disorder.
The incidence of Adult Onset Still’s Disease is unknown. Because of the highly variable symptoms and rarity of the disorder, it often goes undiagnosed or misdiagnosed making it difficult to determine its true frequency in the general population.
We are accepting funds for overwhelming Medical Bills and various other expenses. Many have requested that we start this page to make it easy for them to share and help.
Your help means so much to us because we know Sarah meant so much to everyone who knew her. Again, to know Sarah was to experience her.
Thank you for all of your Prayers, Kind Words, Love and Support.
Help spread the awareness for Turner Syndrome and Still’s Disease!
Read More about AOSD- Stills Disease
Read More about Turner Syndrome
