Little Evie Small was born with a rare condition known as Goldenhar syndrome; she has no hearing, facial or balance nerves. Because of this condition, she’s never heard the sound of her parents’ voices. She’s never actually heard the words, “I love you.” But all of that may be changing soon, thanks to one amazing surgeon and parents that were willing to work hard to raise some much needed money for a very rare surgery.
Evie’s parents, Emily and David have four other children besides the toddler. Upon learning of their daughter’s condition, David and Emily sought out the very best treatment for Goldenhar’s and ended up finding Professor Vittorio Colletti, one of the top surgeons in the world.
“I tell my little girl every day how much I love her, but she has never once heard me,” said David Small. “This is why we wanted to take her to the best surgeon in the world to give her the best possible treatment.”
While it’s believed that no hospital in the UK has ever dealt with Goldenhar syndrome, Dr. Colletti, himself, has now treated seven children with the condition. But like most medical procedures, the cost for the surgery was far from small: a total of £60,000.
David and Emily worked hard to raise the money they needed for their daughter’s surgery. They talked to people, raised awareness for Goldenhar syndrome, and received donations from people that have touched the family’s life and given them hope for the future.
“The support with donations has been overwhelming and amazing – one 93-year-old man sent a check saying he understands what it is like to be deaf,” David said.
But even with all of the wonderful donations, the Smalls had still only raised half of the money they needed. To make matters worse, time was ticking for Evie. Then something practically unspeakable happened.
When the David and Emily took Evie to see Professor Colletti for the first time, he told them, “This little girl needs operating on by the end of June. It’s no concern to me when you can pay.”
And so, last week, Evie went into surgery. The complex operation involved fitting an Auditory Brainstem Implant into her skull. Surgeons across the world were flown in to watch the procedure and some even watched the operation live via video. Evie is now recovering, but she can’t hear quite yet.
“The operation then went very well for her, but it was a stressful time for us,” David stated. “Dr. Colletti said that of the 12 electrodes on the paddle on her brain, 10 of them are working already. He described her as an amazing little lady. She is still quite weak, but her spirit is strong. They will now wait four weeks to allow the brain bruising and swelling to go down before they actually switch on the ABI.”
It is figured that only one in 500,000 children is born with Goldenhar’s condition, but five other children have received the very same surgeries from the very same doctor. They span across the globe, from America to Ecuador to Britain to Poland. All of the families have become close because of a shared condition and a shared hope. And they all have the same long term goal from Professor Coletti.
“We’ve all become firm friends as we’re in the same boat,” David said, adding, “Mr. Coletti has said his aim is to get all five children speaking on the phone within five years as that is, of course, the ultimate test.”
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