Be Brave Ariel Viola White


My husband & I have been together almost twenty years, we had our first child after our ten year anniversary. Our handsome son Brandon who is ten years old now. Two years later we were blessed with a beautiful baby girl Ariel. When I was five months pregnant the doctors told us something was wrong with Ariel but they didn’t know what. After she was born we found out she had a Liver disease. My husband and I were devastated but new it could be worse and stayed strong. When Ariel was three years old she started changing,couldn’t walk without falling,talking less and it was hard for her to swallow liquids and foods. We spoke with her doctors and told them everything that was going on. They started running several tests and couldn’t figure out what was wrong with her. After two years our beautiful daughter Ariel was diagnosed with a rare disease called Neimann Pick Type C disease.
Over the last three years her disease has extremely progressed. My Angel can no longer walk on her own and has been in a wheelchair for the past three years. My family and I understood that her mobility was the least of our concerns when it comes to the progression of Ariel’s disease. As of May 2017 Ariel joined a Reserch Trial Study with Oakland Children’s Hospital. We don’t know if it will help her but all we can do is hope and pray! On October 15,2017 Ariel started having Seizures every day. Her seizures would last under two minutes but she would have almost thirty a day. The seizures caused Ariel not to be able to eat on her own anymore or talk. We met with her Reserch team to come up with a game plan to get her seizures under control and get her nutrition in order. On November 20, 2017 we checked into Children’s Hospital as a outpatient for seizure medication and to get a NG tube placement so she can get the nutrition she needs to survive. We were only going to be at Children’s Hospital for three days. Unfortunately Ariel’s body was so weak she got very sick and was sent to PICU floor. The doctors put her on antibiotics and oxygen and kept a close eye on her. After three days she was able to leave the PICU and return to her original floor. We have been at Children’s hospital for fifteen days now. She’s on the right path to recovery with the virus and we should be able to go home soon. Unfortunately she won’t be able to eat on her own again, her seizures won’t go away but they have slowed down with her new medication. I’m not someone who would asked for money but at this time we need help getting a converted van so we can fit Ariel’s wheelchair in it. We only have a small car that fits her stroller and she’s almost to big for it. We also need to pay some of our bills during this holiday season so we can get back on our feet. Ariel is such a blessing to family and means the world to us! Anything helps no matter what it may be. My family will appreciate any donations. We definitely need to relieve some stress in our life’s. Thank you for reading our story!