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Rose Niedbalski

"Mom is our guardian angel and we are going to make it our goal to raise awareness in Missouri of this deadly disease."

Rose Niedbalski and familyHi my name is Jill and my mother Rose recently passed away on October 17, 2013 from pulmonary hypertension (PH). She also had CREST syndrome, Raynaud's syndrome, scleroderma and scoliosis. My mom suffered a long time before being diagnosed. It started about two and a half years ago when she started seeing symptoms of her hands turning white and stiffness in her joints. Then it turned into not being able to breathe after a short walk. She saw doctors who had no idea what to do so instead they would not return calls and ignore her all together.

Rose Niedbalski and granddaughter

It took until March 2013 for us to find a doctor that diagnosed her and admitted her after one visit. That is when her life with Veletri and oxygen began. She began to lose weight and had some good days and some bad. We took a trip to Cleveland for a double lung transplant evaluation in August. We planned on going back in Oct., but didn’t get the chance. My mom had a lot of fluid around her heart so on Sept. 30 she almost stopped breathing. She had the surgery to remove the fluid, but during the surgery her body went into shock because of the removal and her blood pressure dropped and her heart rate went to 190. It was a long recovery, but she did it. Every day we thought she was better and she was able to come home. Three days after we arrived home she went to the restroom and stopped breathing. It was the hardest thing to have to see her dying right in front of me. The ambulance came and tried to revive her for two hours, but enough was enough. She fought so hard and she was tired. Mom is our guardian angel and we are going to make it our goal to raise awareness in Missouri of this deadly disease that is so unknown.

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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.