Propionic Acidemia

August 4, 1983 – July 3, 2022

What a journey we have had together.  Little did we know that the sick little infant with PA would be such a blessing in our lives.  Your smile and zest for life touched sooooo many lives in the nearly 39 years you were here on this earth.  You shared your joy and enthusiasm with everyone you met and your excitement was contagious.  PA was not an easy path to travel, yet you managed to be cheerful despite the nausea, vomiting, feeding tubes, blood draws, IV’s, broken bones, and hospital stays. You taught us all how to live with joy despite your circumstances.

PA was so rare when you were born.  But we were fortunate to live near Johns Hopkins, and with the help of the Genetics doctors there (especially Dr. Hamosh), you lived so much longer than anyone expected.  You loved to be busy with crafting paper dolls, working at Rite Aid, singing in Stacattos, attending Halloween dances, going to musical theater shows and Disney on Ice. You loved to collect dolls and stuffed animals from your favorite movies, and you had quite a collection.  A nurse at Hopkins introduced you to Ebay and you were one of their best customers.  You loved traveling anywhere and you never forgot how to get to your favorite places. (Who needed GPS with you in the car?) Some of your favorite places to go were:  visiting the Science Center to see the dinosaurs and Imax, traveling to Ocean City to see the banner planes take off, and a special trip to Disney World where you got to meet your favorite character, Gaston.  You also loved staying in hotels and looked forward to going to the OAA Conferences and NIH where you saw your friends Miss Susan (you especially liked the ladies), Dr. Oleg and Dr. Vendetti to name just a few.  You loved to celebrate holidays and especially loved parades like the 4th of July and Christmas. The Macy’s Thanksgiving Day Parade was the favorite where you looked forward to seeing who comes at the end…”the Red Guy”… of course! You made life so much more fun!

In the past few years life was harder for you, and for all of us.  It broke our hearts to see your body in decline and your heart and kidneys weaken.  But through all the pain and suffering you persevered. Your sweet spirit remained strong and you could make everyone smile.

We were blessed to care for you during your short stay on this earth.  When your heart finally gave out, it left a hole in our hearts that will never be filled.   What we must do now is honor your memory and live as you did, spreading love and joy wherever we go.  You were God’s Angel sent to teach us the way we should live.  We are so grateful that God entrusted us with His special angel. We will cherish the memories forever…. until we see you again.

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