On Update on Sophia with Hypereosinophilic Syndrome

July 2, 2013

Sophia is our 2 1/2 year-old daughter who is just going along learning and doing. On June 19th of this year we found out that not only does she have extremely rare hypereosinophilic syndrome but for certain the ‘thing’ on her brain is a venous malformation and will need to be dealt with. Back in January when we were given the definitive diagnosis of HES the doctors all hoped that this would have been the cause of the tangle that sits on her brain. After a further contrast die MRI/MRA we were shown that it is not from the HES but it is a separate diagnosis, making her again one in a million.

Sophia will have to have an angiogram with contrast to get an even better picture. That will tell us if we can go back in for a catherization procedure to clot off the vessels that are feeding the tangle with blood or if we will have to see her undergo an open skull surgery to remove the tangle of vessels. Her neurologist feels the second procedure would leave less likelihood of further brain damage over the catherization but the catherization stands less likelihood of problems from infection and the just basic issues of opening the skull on a small child.

Since the procedures will have large out of pocket expenses family and friends are working together to put on a fundraiser for her. We will be having a barbecue plate sale, silent auction and walk (either a 2 1/2 km or a 5 km walk). Many of our family and friends are sponsoring t-shirts and will be helping either work the event or providing items for the auction.

Sophia loves to sing at church, play with her toys, learn letters, numbers, colors, shapes, and animals. Every day she surprises all of us with her personality and intelligence. She LOVES her dog Max, Betta Pi, and new Golden Inca snail Ana. All of us love watching her do all of those things. The biggest problems we have right now are Prednisone eating issues, some insomnia, and the prospect of major surgery.

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