About Rafaella Lily

Rafi is one of the strongest and bravest people on earth. The difficulties she has faced in her short life, and the painful challenges she continues to endure every single day, are unimaginable to the rest of us. She lives a life of discomfort, anxiety and loss of function. Yet, Rafi will tell you she is just like every other kid. She loves to watch movies and television, Jessie, Liv and Maddie, Cupcake Wars and the Wonder Years are current favorites.  She loves the swings, loves to sing, loves to draw and paint. She loves her dog. 

Rafi is an incredible public speaker.  She has spoken about what it is like to have EB at each of her three schools, to more than 250 employees of Shire Pharmaceuticals, and at a separate time to the top executive team at Shire, including the CEO.  Rafi was asked to speak at an upcoming national sales meeting of the bandage manufacturer that makes the bandages she wears every day.  She is an incredible advocate for those with EB.  But there was one day in particular that blew us away.

Television commercials were being developed by debra of America to raise awareness and money.  Our house in Ardsley, NY was being looked at as a possible site to shoot the commercials.  At that time, Rafi looked directly at John Rea, the executive creative director at Havas worldwide Tonic, and said:

“How come you didn’t ask me to be in the commercial?

 I want to help raise money for everyone with EB.”

John, Jackie and I fell silent at that moment.  Then we laughed.  We were blown away.  So, Rafi auditioned for a role in a commercial with John and with the director Chris Groban, and here is her incredible commercial.  You should know that Rafi was not scripted.  All of the words she speaks in the commercial are hers.  

Please be aware, this video truly shows what EB is and may upset you.

We do not advise that young children watch this.

 

Here’s her incredible story:

Two weeks before Rafi’s due date, Jackie was told birth can happen at any minute.   At any minute became a month later when we headed to the hospital so Jackie could be induced.  It was November 19, 2007 and after a healthy dose of Pitocin and 10 hours of labor, Rafaella, who we nicknamed Rafi 6 months earlier, was born.  Rafi was slow to come into this world, and continues to be very deliberative in everything she does. 

Rafi was a beautiful and incredibly alert little baby.  However, we noticed that she was missing skin on both of her feet and on the back of one hand.  We were concerned and asked questions but 2 physicians told us that she was just “overcooked”.  They had seen this before in a number of babies, so we shouldn’t be worried.  6 hours later our lives would take an abrupt turn.

Within those 6 hours, Rafi’s body blistered all over so she was taken to the neonatal intensive care unit (NICU) where she was placed in reverse isolation to decrease infection risk.  In other words, Rafi was given a private room.  Nobody knew what was wrong or what the outcome would be.  Would she even leave the hospital?  The next week was a whirlwind of tests to determine what was wrong with this curious and alert infant.  Finally, a pediatric dermatologist was consulted and we had our answer a day later which was confirmed a month later by genetic testing, Rafi was born with recessive dystrophic epidermolysis bullosa, generalized severe.  You can learn more about EB and Rafi’s type of EB by clicking the ABOUT EB tab above.

In late 2007, there was no real hope of a cure.  There were no large pharmaceutical companies or biotechnology companies developing therapies and there wasn’t much basic science work going on.   However, one month before Rafi was born, patient number one underwent an experimental stem cell transplant in hopes of treating or curing his EB.  Rafi became the 8th child in the world to undergo the stem cell transplant. 

For almost two years we lived in Minneapolis.  Rafi was given high dose chemotherapy to kill her immune system, then got her new cells from the cord blood of a little German girl.  To make a long story short, it was a terrible and difficult therapy.  There were many bumps in the road.  92 straight days and nights living in a hospital.  104 degree fevers daily, emergencies, waiting for her immune system to come back and for the new cells to arrive.  And now the new cells that come from her bone marrow make collagen VII, the protein she couldn’t produce before the transplant. 

When we came back to New York City, Rafi was lucky to have gone to two very supportive and incredible schools, Montclair Children’s School and The School at Columbia University.  She made great friends.  She did well in school.  We started Rafi’s Run and she got Jake, her dog.

This past summer the Kopelan family left New York City and moved to Ardsley, NY.  Rafi joined the Girl Scouts, plays a musical instrument, sings in the chorus and participates in after school programs.  She is embracing life and living it to its fullest. 

However she still has to go into the hospital every 4 months.  We alternate between two hospitals.  At Montefiore she gets blood to treat her anemia and then we travel to Cincinnati Children’s Hospital where she gets a throat operation, called a dilatation, to make sure she is able to swallow liquid. 

Jackie said in a speech at the first Rafi’s Run that we felt lucky when she was first born and were told she was perfect, then it only took hours for that feeling to change….but from all the love and support we’ve received, we feel lucky again.

Thank you from the bottom of our hearts,
Rafi, Jackie and Brett Kopelan