Hope For Aaliyah
Soon Aaliyah and her parents will be traveling from their home in Billings, Montana to Colorado Children’s Hospital for a series of tests related to her vein of Galen malformation. Although Aaliyah has had unspecified operations in the past, she is still experiencing seizures and heart problems. On November, 12, the Billings YMCA, where Aaliyah’s mother and stepfather both teach classes, will hold a fundraiser for the family. You can read more about Aaliyah here - http://www.kulr8.com/news/local/Hope-for-Aaliyah-133593793.html ...
Read MoreLouis Trupia
Louis Trupia was born in London (UK) on 13 June 1996. He was a perfect baby, an absolute angel, but looking back now, all the signs were there that all was not well. From being a very healthy birth weight Louis soon dropped down two lines on his centile chart, and he slept most of the day. He hated to crawl but we taught him how, and he was walking at 11 months, although his balance wasn’t brilliant. He was very calm and quiet and didn’t speak, but he had ‘glue ear’ so it wasn’t surprising. By the age of two he wasn’t sleeping so much and was reaching all his milestones. However,...
Read MoreAlfie Dale
I found out that I was expecting identical twins at my 12 week scan and with no history of twins in our family this came as a very huge shock. Due to the complications that twin pregnancies can come with I was scanned again at 16 weeks and it was at this point it was discovered that I had a condition called Twin to Twin Transfusion which can put both babies life at risk depending on the severity. Initially mine was only thought to be mild but they made a decision to monitor/scan me regularly to keep a close eye on the babies. At 20 weeks we were told that we were expecting twin boys who we...
Read MoreCNN Health Video – Dr. Berenstein Discusses Surgical Glue at TEDMED
This video from CNN Health shows Dr. Alejandro Berenstein giving a lecture at TEDMED 2010 about the practical and frankly amazing uses for surgical glue, a technique he helped develop to treat Vein of Galen malformation. The video, almost 15 minutes in length, illustrates how the delicate embolization procedure is performed, using tiny catheters threaded from the groin site up in to the arteries of the brain. Using MRI data and dramatic before and after pictures, Dr. Berenstein provides a detailed explanation of how this procedure can be used for VOGM treatment, as well as, other...
Read MoreSurgery Cancelled for Ella-Grace
After spending only 18 short hours in the United States, Ella-Grace and her family are returning home. Ella-Grace traveled from England to New York for what they hoped would be a final angioplasty and embolization procedure to close the remaining arteries leading to her vein of Galen malformation. Although the family reported she was fine when she boarded the plane, with just a bit of a cough, by the time she reached the hospital, she was diagnosed with a chest infection. Her VOGM condition is stable at this time and she is scheduled to return in the spring for the final...
Read MoreElla’s Long Journey
Yesterday, Ella Grace and her parents traveled from England to New York for what they hope to be her final embolization surgery. This will be the family’s 7th trip to the United States to treat Ella’s vein of Galen malformation. Before each procedure in New York, Ella’s family and supporters have already been hard at work in England raising funds for travel expenses and the highly specialized surgery required to treat her condition. The family typically spends a week in the hospital before they fly back to...
Read MoreSyndicate
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