Memorial story

Delaysia Williams

by her mother Miroshala Allison

Delaysia WilliamsThis story is about my daughter, Delaysia Williams. On April 15th of 2008, I was ending my normal day as a hard working single mom. I just got off work and was going to pick my baby up from school. I needed to run an errand, so we stopped at Target to pick up some things. When we were walking in, Delaysia said, "Mommy, I'm tired" and three seconds later she hit the floor and fainted. I was flabbergasted in shock. This had never happened before.

I called 911 and we went to the hospital. The emergency room doctor couldn't figure out what was wrong, so we were transferred to Miller's Children's Hospital in Long Beach, CA. After many tests and worsening fainting spells I took my daughter to Los Angeles County and the University of Southern California Medical Center where they gave me the worst news of my life. She had PH.

We were then transferred to Children’s Hospital in Los Angeles (CHLA) in May 2008. We met Dr. Jacqueline Szmuszkovicz to get more information on the disease. After the right heart catheterization and a lung biopsy the doctors again gave me even worse news. Delaysia’s actual underlying condition was pulmonary veno-occlusive disease and she had ten months to live without a double lung transplant.

My family and I were totally devastated with this news. Especially since she had been healthy all of her life and had never displayed any symptoms until she fainted two weeks prior to this. She was prescribed Sildenafil and Warfarin and eventually got better for the time being. We were in close contact with Dr. Szmuszkovicz and her staff until later in the year around Christmas when Delaysia suffered a pulmonary crisis and had to be hospitalized for a week. We went home on New Year’s Eve, but had to go right back to the hospital after she fell into a coma. She never regained consciousness. We removed her from the ventilator on January 8, 2009.

I joined PHA a couple of months after my baby's death and I've met a lot of other beautiful people in the PH community including Steve and Marina Van Wormer. I am really grateful to my family, CHLA and PHA for providing the information I need on this condition. Even though my battle didn't last that long, the overall battle will last until we find a cure. R.I.P Delaysia Arian Williams. March 4,2003-January 8,2009.

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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.