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Memorial story

Vanessa and Valerie Sauceda

by Gina Sauceda

I am a mother of three beautiful daughters: Vanessa 22; Valerie, 13 (when she got her wings) and Nicole, 15. Vanessa and Valerie were four years of age when diagnosed with PPH. Nicole has been checked and rechecked and is fine. Valerie was always in and out of the hospital, never seen a pulmonologist or been on meds. She had her fourth heart catheterization on January 4, 2002. The doctor started her on Nifedepine on January 11 when she ended up in the hospital. She passed away January 12, 2002 of heart failure.

Vanessa was ok up until December, 2001 when she ended up in the hospital with pneumonia. We almost lost her at that time; she was in the hospital for two and a half weeks. She was sent home January 10, 2002.

After Valerie's passing, our story was on the news. We were sent to Palo Alto, CA, to see a pulmonologist for Vanessa. She was started on Flolan in June of ‘02. Since then she has been on many, many different medications and during this time she was seeing Dr. Feldman through St. Joseph Hospital. She has had many bad days as well as good since.

Her sixth heart catheterization was May 6, 2009 and she had to be admitted. She was told she was doing good, but for her to try to get her strength back to go to Palo Alto on the 19th for heart and double lung transplant. On May 16, 2009 at approximately 10:15am her doctor said she may only last a few days, may not get to go to California. Vanessa told me she was tired and wanted to sleep, it was her own choice. She went home to the Lord to be with her sister Valerie May 16, 2009 at 10:20pm, at age 22. She too has her wings. My Angels are free!!

 

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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.