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Patient story

Brian Dancy

Brian Dancyby his grandmother, Zena

6/30/11 – Update on Brian:

He is off his ventilator all day now, and is currently being weaned off at night. He's also being weaned off of the Sildenifil, which he's taken 3 times daily since being discharged from the hospital in November 2009. He has had a few illnesses, which delayed his coming off the vent in the Spring, but he is progressing. Although he will be able to come off the vent by Fall 2011, his ENT informs us that his upper airway is still too narrow to be decanulated, so he'll have the trach for a while longer. He's been through several surgeries, and God continues to keep him strong throughout. Thanks to PHA for the website and support you offer.

Brian's health update:

This is an update on Brian Dancy, whose story was submitted almost a year ago. Brian is a thriving and very active toddler now. He's still on a ventilator, but takes it off and runs through the house every chance he gets. He's being weaned slowly with the hopes of being off the ventilator by next spring. We still pray for a cure though; it makes me sad sometimes as I watch him struggle to communicate, and i can tell when the vent frustrates him and he snatches it off. All in all, he is a happy child despite the challenges, and my daughter and I are blessed with his presence.

Brian DancyBrian's diagnosis:

Brian was born in February of 2009 with underdeveloped lungs (pulmonary hypoplasia), and spent two months in the NICU. He came home on oxygen, and was OK for a few months; then in August, 2009, he developed pneumonia, and when admitted to the hospital, it was discovered that he had pulmonary hypertension. He was placed on a ventilator, and after several unsuccessful attempts to remove him from the ventilator, a tracheotomy was performed. Because of his great difficulty breathing, he was no longer able to take a bottle, so a G-tube was placed for his feedings.

I can't even begin to describe the myriad tests and procedures he has had. He has spent the past three months in the ICU and stable ventilator unit. The list of drugs he was on while there is overwhelming. I lay over his bed many nights praying for him - there were tubes coming from everywhere in his body, pic lines, arterial lines, drainage lines, feeding tubes, and IV's. At just eight months old, he has been through so much but still remains a happy baby who loves to kick his feet vigorously. He is my first grandchild, and the love of my life. I thank God every day for him and for the excellent medical care he has received.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.