A New Set of Wheels

Okay, so this isn’t related to my game or The Sims, for that matter. But my youngest granddaughter received her Pediatric-therapy-wheelchair-stroller today.I wanted to share this, and bring awareness to this medical condition that I never heard of until the day she was born. My daughter,(her mom) was first diagnosed with Porencephaly. Which is similar to Schizencephaly. However, the survival rate for those with Porencephaly is not good. We were prepared that she would die either before, during or shortly after birth. We choose Serenity Grace, as she would be the calm hand of God, in the short time we knew her. Luckily, the doctors were wrong and we still have this precious child in our lives today.

My granddaughter, Serenity, has a rare medical condition called, Schizencephaly. It is a rare disorder that affects the brain as it is in the developing stages, between the 1st and 2nd trimesters (1-5 months gestation period). There is no known cause to this medical phenomenon.  There are many forms from mild to severe, open or closed-lipped, lateral or bi-lateral. Serenity, has the worst case of Schizencephaly. Her diagnosis is: Open-lipped, bi-lateral, hydrocephalus Schizencephaly. And she also has a mild form of Cerebral Palsy. Open-lipped means the ridges around the missing part are not ridged or formed. They have like tentacles. Bi-lateral means the brain stopped developing on one side and crossed over to the other. She has a back portion of the left side of her brain missing and it crossed over the top of her head to the right side, where a small part of that is also missing. The hydrocephalus is also known as “water head”. She had to have a shunt put in to drain excess fluid off her brain, when she was just 3 weeks old, as the natural tubes we have, didn’t develop.  She has a wonderful personality, always smiling. She is receiving physical, occupational, and speech therapies weekly. Her fine motor skills are those of a 7 month old child and her speech is that of a two month old.

Serenity is our “Little Angel sent from above”.

This chair is designed specifically for her needs. It stabilizes her head and spine and puts her whole body in a much better alignment than a conventional stroller.

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