Many of you may know Sophie- my beautiful, intelligent and happy four year old niece. Recently she went for her routine four year check up and had very high blood pressure (about 160/100). The doctor told her mom (Ana) to come back and they would check it again. Her blood pressure was high again when they went back. After cat scans and MRI’s they saw a narrowing in her aorta in a few places, a smaller kidney and a enlarged heart.
All of this made no sense to any of us, she was always so happy and full of life. Sophie didn’t seem sick at all.
Ana and Scott flew Sophie to Cinnicinati children’s hospital to get a procedure done to help with the narrowing. There they discovered that her insides were inflamed so they could not continue with the procedure.
At this point we heard the first possible diagnosis of takayasu- an extremely rare auto immune disorder. Sophie was emmited to Phoenix Children’s for 16 days while they tried to treat her inflammation and high blood pressure. She left the hospital recently on seven different types of blood pressure medications, steroids and chemo with the hope that we would continue her treatment at home and get another MRI in 3 months to see the progression.
Unfortunatly, that was not the way it worked out.
Sophie started crying in pain because her foot was hurting. Ana noticed that it was colder than the other foot and discolored. Worried she rushed her to the hospital. They did more testing on her and found out that she had a massive old and hardened blood clot near her hip and another blood clot in her toe.
After two failed procedures to get the blood clot to move, Sophie’s lungs colapased yesterday and she is currently on breathing tubes. Ana and Scott plan to fly her to Boston children’s hospital in a medical emergency plane where they have doctors who have treated this horrible disease takayasu and can help her with her blood clotting.
This is the most traumatic event my family has ever been through. Sophie is our little angel and was a happy four year old girl with so much life in her. This experience has drained her and her beautiful parents who are doing everything they can to save their little girls life. The last thing I would want is for them to worry about money and hospital bills. I know that currently they are in a lot of debt with everything that has happened. The debt is the last thing on their mind, but if we can help make their lives easier while they continue this hard and long battle then it would mean the world to them and to me.
I appreciate you taking the time to read about Sophie’s story. If you are unable to help financially, just sharing this message and getting the word out there is more than enough. I will also be posting updates of how Sophie is doing periodically. Thank you for your support! We are #sophiestrong!
***Please note: at the moment Ana and Scott are not in a place to discuss Sophie’s state. They are focused on getting her the best care and being a strong support for Sophie in the hospital. Please respect their privacy right now as this is all very new. If you have questions, you can direct them to me.
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