Bria is a bright, beautiful, brave, and strong 15 year old girl from Southeast, Texas, with CLOVES Syndrome. For years, doctors misdiagnosed Bria with Klippel-Trenaunay Syndrome (KTS). Now, I have a more accurate diagnosis & description of her situation! There is a whole new world if information for us to learn about CLOVES Syndrome. This stands for Congenital, Lipomatous, Overgrowth, Vascular malformations, Epidermal nevi, & Scoliosis/skeletal/spinal anomalies. It's even more rare than KTS! There are only about 200 people worldwide with CLOVES Syndrome! There is NO CURE for CLOVES Syndrome!! Bria will always have surgeries for the rest of her life.
I (Sophia Martel Baumann) do my very best to keep her life as normal as I can. It's been hard on the two of us, since the divorce. Sabria loves to play with her animals. She has 3 cats and 4 dogs, they always find a way to make her smile. Bria enjoys singing in the school choir and dancing between surgeries. She does her best to live her life like any other healthy kid. Sabria's birth defect is extremely progressive. Bria has only 1 lung and her heart is enlarged and compressed by malformations within her chest. It causes excess growth of bone and soft tissue, swollen veins, abnormal blood vessels and malformed lymphatic vessels. There is no single specialist, that can manage her condition. She has a team of surgeons, that have to help manage her condition. She will be going to Boston, Massachusetts on July 11th, 2018 to meet with several teams of surgeons. Dr. Upton wants to talk to us about a promising experimental drug. She's been having several problems and needs her 30th surgery. But they've been having problems getting operating room time for her for months. Because her world renowned surgeon doesn't work only at Boston Children's. He has his own office. So, he can perform surgeries at 4 different hospitals. He has to get O.R. time from another surgeon. Plus, Bria's surgeries are several hours long. Bria will always have surgeries for the rest of her life. Many of Sabria's surgeries are considered cutting edge medical care or experimental. So, insurance won't cover the some fees. We still owe money to the surgeon from her last surgery in 2015. Also, have an extremely large on going hospital bill at Boston Children's Hospital. It's very expensive to travel & stay in Boston, Ma. But it's the only place in the world that can help Bria. Managing the expenses that come with Sabria's illness are daunting at the best of times. But my Bria's worth it to me. I'm so very thankful to still have my Bria. So every dollar donated is greatly appreciated.
A little history:
Sophia and Chris had been married for 5 years, when they started trying to have a baby. Like all prospective parents, they never thought they would have a special needs child. It took them 2 years to get pregnant. So, they were over joyed when they found out they were having a baby. Sophia did everything perfectly right before & during her pregnancy. It was a very difficult pregnancy. After she started spotting, she had a sonogram. Doctors found a couple of cystic hygromas growing on the fetus. They wanted her to abort because it was going to be dangerous for her and the baby might not survive. But they wanted Bria. So, when their baby girl was still born 6 weeks early, at 7 lbs 5 ozs with a birth defect. Doctors estimated Bria weight approximately or almost 5 lbs. And the 2 lbs 5ozs was the lymphatic venous malformations. They first time parents still weren't prepared. It was shocking for some people, even the nurses. There's never been any pictures of Bria put online, when she was first born. Pictures have been shown privately and personally to friends and educate people. After Bria was born, doctors 1st diagnosed her with Lymphatic Venous Malformations. She had her first surgery at 20 days old. Bria had a very hard beginning to life. She had extremely huge malformations or masses on her. Bria had to have an NG tube for 6 months, it's a tube that Sophia had to place down Bria's nose into her stomach to feed her. Because she was unable to drink from a bottle for 6 months. At age 3, Sabria was diagnosed with Klippel Trénaunay Syndrome (KTS). It's an exceedingly rare and complicated congenital condition, that only 2000 people. When she was 13 years old, she was finally diagnosed with CLOVES Syndrome. There are only 200 people worldwide with CLOVES! Also, there is NO CURE for CLOVES! It affects most of Sabria's body, neck, back, chest, left arm, hand, fingers, right foot and leg. She has only 1 lung, a malformation is wrapped around her kidney, a malformations pressing against her enlarged heart and esophagus. She's extremely venous. Her right leg and foot are growing at a greater rate than the left. She has had 29 surgeries over the years. Sometimes, Bria had to have a couple surgeries in a year. She's alway been beautiful, brave, strong, and happy. But she's had a hard time the past 2 years, during the divorce. It's been hard having to take care and manage Bria's health problems by myself. But I've been really doing it alone for years. I just don't have the support, anymore.
Why travel to Boston when Houston and Texas Children's Hospital is so close?
After Sabria was born, Texas Children's performed several surgeries to remove the malformations. During one of those surgeries, things did not go well. A cardiac surgeon had to be called in, to open up Bria's chest to do heart resuscitation and try to repair some venous damage, that she was bleeding out from during surgery. Sabria had an extremely close call; she almost died. After that surgery, the doctors determined that Sabria was beyond their hospital's capabilities. With the help of Texas Childrens and Sophia Baumann researched other doctors all over the US. They finally found two world renowned doctors at Boston Children's Hospital in Boston, MA., Dr. Stephen Fishman and Dr. Joseph Upton III. They have been heaven sent and have done wonders for Sabria. She would not be alive today, if it weren't for God and these surgeons! I'm very thankful and blessed! Sabria has a few angels, that are always around her!! She's a true miracle!!!
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- Carla Creekmore
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