Patient of the Month- Juliana R.
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This story starts in a small village in China. A chubby cheeked baby girl with curved and twisted arms and legs was found on an old man’s doorstep. My name is Rebecca Raguso and I am that baby girl’s mother. My husband, oldest daughter and I got to wrap our arms around Juliana when she was 20 months old. She was full of light, mischief, determination, and was riddled with pain. She could not stand and her perfect little feet were twisted almost backwards. She was diagnosed with hypophosphatasia within a month of arriving in the United States. She didn’t qualify for the Strensiq drug trial because we couldn’t prove she was symptomatic before she was 6 months old. So, we spent our days treating her migraines, her back and neck pain, her constant vomiting and trying to keep up with her untameable spirit. In spite of her pain and in spite of her inability to stand or walk, she climbed everything and developed her own sign language to communicate with us until she started using English words.
We educated her preschool on the condition so they wouldn’t send her home every time she threw up or be shocked when her teeth fell out roots and all. They made sure all vegetables were cooked soft for her toothless self and learned how to work the 5 pound twister cables she wore when they changed her diapers. Juliana was 3 ½ years old when she started Strensiq. She received three slow injections a week. Within a month she was able to jump and run. Her muscles grew stronger and she spent the entire summer working on riding a tricycle all the way around the sidewalk loop at preschool. When she finally completed the loop, her teacher cried when she told me about it.
She is now entering 6th grade. She has lots of friends who all know about her condition and slow themselves down to play with her. She can’t keep up with them, so they keep up with her instead. When she was recovering from a double tibial osteotomy in 2nd grade, there was a little boy who brought her a gift so that she could play in her wheelchair during recess with it. When she started walking with twin walking boots, there were a couple of kids who just sat on the swings with her or brought out sidewalk chalk to do with her. She sat out field day every year but helped her teacher take pictures. In middle school and high school, she will be accommodated and not have to take the PE requirement.
Outside of school, she loves horses and takes lessons from an adaptive teacher. Juliana is a natural on a horse. She is very frustrated that she can’t play soccer or lacrosse like her friends because one accidental kick to the leg could break her. Juliana also suffers from Medical PTSD. Sometimes it rears its ugly head after a painful injection or a doctor visit, and it’s always present before and after a surgery. She has had 8 surgeries and two of them were 2 night hospital stays with a lot of pain and vomiting. We can always see a PTSD rage coming when she starts quietly and systematically tearing her room apart. I have learned that the best thing to do is stay close and when she is ready just wrap her in my arms and let her cry it out. Our girl is such a fighter and an amazing spirit. She has taught us so much and we are so very lucky she is in our family. We are so grateful for Soft Bones for continuing our education on HPP and giving us the chance to get Juliana’s story out there.
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