Dear Blog Readers,
This past week we have been following the story of little Lizzy Myers, the five-year-old girl from Mansfield, Ohio who has come to Rome with her family as part of a “visual bucket list” they are trying to complete before she goes blind.
By the time you read this post Lizzy will probably have had her chance to greet Pope Francis at his Wednesday weekly audience where she is expected to be sitting at the front.
Lizzy has a rare genetic disease called Usher Syndrome Type II A which is slowly taking away her hearing and gradually making her blind. Lizzy does not know yet this is going to happen.
Her parents, Steve and Christine, decided to make up a “visual bucket list” so their daughter can see many of the wonders of the world before she loses her sight.
Speaking to the AP last Saturday in the garden at their hotel on the Appia Antica in Rome, her parents explained that the list has many simple things on it like catching fireflies, seeing a rainbow, swimming in the ocean, and viewing the stars and the moon.
The Myers family lives near the Warren Rupp Observatory in Ohio so Lizzy and her friend got a special trip to the observatory to check out the night sky through a big telescope.
The trip to the observatory made it onto the local news and before they knew it the Myers had an invitation from the head of Turkish Airways for a flight to anywhere in the world. “It took us all of about 30 seconds to decide that Rome was the place,” her father, Steve Myers, told us, “Both because we are Catholic but also because of Lizzy’s interest in art and big things, you know, history. It wasn’t a difficult decision.”
Last Friday AP cameraman Gianfranco Stara and news assistant Sarah Chiarello followed the Myers family as they got a tour of the Roman Forum and Coliseum. Gianfranco told me he was moved when he saw Lizzy carefully tracing her finger over the engraved letters of Julius Caesar on the base of his statue.
She trotted happily over the giant Roman cobblestones outside the Coliseum and listened attentively to their guide.
Steve and Christine Myers described how they ended up with a “visual bucket list”. “I think that happened almost immediately when we found out that Lizzy had Ushers Type 2A,” said her father Steve Myers using the name of the rare genetic syndrome that he says Lizzy was diagnosed with, “Once we got over the initial shock of all of that we realized that we have to do as much as we can to let her see as many wonderful things as possible.”
Lizzy’s mother Christine explained their decision not to tell their daughter about her disease. “She knows that she has hearing problems, she wears hearing aids, she has adjusted really well to those, but we have not told her anything else because she is five,” said her mother Christine Myers. “I want her to live as normal a life as she can, now. There will come a time when we will have to tell her. I dread that day.”
Their two daughters played cheerfully in the garden behind them as Steve Myers said they were looking forward to tomorrow’s visit to the Vatican. “We are hoping for a little special prayer or something for Lizzy and maybe a miracle will happen that way as well.”
He then glanced across at Christine who said, “no, we already have our miracle. This is already a miracle.”
A heart wrenching tale, and a heart-warming one, too. Who can blame them for hoping for a miracle? What a staggering amount for a little girl to be facing. I hope Pope Francis gives her a hug and a smile she can remember for the rest of her life. And the parents need hugs, too, it must hurt so much to watch this happening.
Thanks for writing about it so well, letting us in on the sunshine in a brief bright day.
I agree both heart-wrenching, thinking about what this little girl has to go through, and heart-warming, seeing how her family is facing this with such courage and how so many people are reaching out trying to help them fill the “visual bucket list”. She did get her hug from the Pope who gently caressed each of her eyes.
Trisha. Just finished reading a Cleveland Plain Dealer story this morning on Lizzy’s going to see Pope Francis–and here you are with a timely update! Molte grazie!
Prego Roger. Glad to know I can be timely sometimes. As a mother, I have been moved by the story of Lizzy Myers. What a gorgeous little girl she is! I also admire the courage of her parents. The years ahead will not be easy, but they seem so caring and strong and I know they will manage and give their daughter the best possible care she can get.
Please have this family check out the Usher Syndrome Coalition at http://www.usher-syndrome.org. It is a wonderful source of support and information about Usher, for families and individuals with the disease, as well as researchers and others trying to help. There is an annual family conference, this year in Seattle, Washington/USA in July.
We also have a group of 28 deafblind authors writing a book about their experiences learning how to live with the disease– inspirational and uplifting. It is called “Walk in My Shoes.” Good luck!
Thank you Charlotte, it is so kind of you to share this information, I will send it on to someone who is in touch with Lizzy’s parents. Also, I am inspired to hear about your nephew Randall with his two university degrees, that is impressive. I am convinced little Lizzy will accomplish a lot in her life as well. She is clearly a bright and talented child.
P.S. My nephew Randall has the worst form of this disease, Usher 1– he has been deaf since birth and now is legally blind, yet has two university degrees.