When Pearl was born, the doctors saw she had some "bruising" on her head and face. At barely two weeks old, we were sent to the University of Iowa Children's Hospital where we learned that Pearl had hemangiomas and vascular anomalies on her head and face, as well as internally. She was immediately put on propranolol which she's been on continuously since.
Later on, we'd learn she has a very rare disease, called PHACE Syndrome. That means she has a few of the symptoms required to qualify: a large hemangioma on the face/neck and heart abnormalities.
In March of 2015, Pearl was hospitalized for Failure to Thrive at just one month old. In May 2015, we returned for another hospitalization for Failure to Thrive, but this time we left with a feeding tube. I learned how to change the tube and give Pearl her feedings so she could be comfortable at home and not in the hospital. By July, we were able to remove the feeding tube and get Pearl to eat more on her own.
By October, Pearl's weight and development were still behind compared to where she should be. She was hospitalized for Failure to Thrive again, and the doctors also put her on steroids to help her gain weight and heart failure medication because of the two holes in her heart.
From the moment she was born, Pearl has been on a medical journey that no child should have to go through, and she's remained happy and loving through it all. Everyone who meets her is blown away by her outgoing, affectionate personality.
We are still working on Pearl's development - at a little over 2-years-old, she still weighs only 23 lbs. and can fit into some 12-18 month clothing. She sees in-home development therapists to help with her speech which is delayed because of being deaf in one ear (the hemangioma affected its growth) and hard-of-hearing in the other.
Her medical prognosis is unknown and we continue to take things one day at a time. Just last month, we were referred to the top specialists for Pearl's medical condition at the Children's Hospital of Wisconsin who recommended chemotherapy. Unfortunately, because these specialists are out of network, Pearl's appointments will not be covered by insurance. The doctors in Milwaukee and Iowa City are working together to treat Pearl in Iowa under her healthcare, however, the Milwaukee doctors would still oversee her treatment which means out-of-pocket medical costs for every appointment in Milwaukee.
I never wanted to have to ask for help, but I've reached a point where I can't afford it on my own anymore. Any dollar you can give will help Pearl move forward positively to finding answers to her "one in a million" medical problems, and I cannot thank you enough for anything you donate. Know that you, personally, will be helping my daughter's future and I THANK YOU.
- Sara BITTENBENDER
- Taylor Difatta
- Melissa Clendenin
- Becky Reaves
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