Ethan Faria captured global sympathy when he was diagnosed in July 2015 with haemophilus influenzae type B (Hib), a dangerous bacterial infection that can be life-threatening.
Ethan could be anyone’s child. He was a healthy 14-month-old when he developed a fever that quickly escalated. A routine visit to the hospital had doctors informing his parents to prepare for the worst.
Ethan endured numerous surgeries. He had both legs amputated below the knee and his right hand amputated below the wrist, and all of the fingers, except for one, on his remaining hand amputated.
Hib is an infection of the cerebral and spinal cord fluids. For Ethan, it led to disseminated intravascular coagulation – a condition in which blood clots form in the body’s small blood vessels, cutting off blood supply to organs – and skin necrosis.
Ethan will need years of therapy and rehabilitation, as well as to learn to use prosthetics. A crowdfunding campaign to assist Ethan and his family raised more than $101,000 globally.
Ethan was released from the Hospital for Sick Children last October and today is described as a typical 2-1/2-year-old, minus a few limbs.
Now, Wire Publishing, Canadian children’s book author Kari Ward, and vocalist and pianist Vanessa Elisa have united to produce a fundraising vehicle for the Faria family.
Marley & Maverick Find Ethan’s Magic Legs and the accompanying song Superhero were inspired by Ethan.
“Ethan is a superhero. It is a miracle he is alive today. Superheroes inspire other children,” said Wire CEO Felicia Pizzonia.
A free community book launch is set for Nov. 16 at the Artscape Sandbox in Toronto. Attendees can meet the author and purchase the book, as well as hear the song Superhero live, with appearances by Ed Culjak and surprise celebrity guests.
Pizzonia was the brainchild behind the initiative.“I was touched by Ethan’s tragic incident. It broke my heart. I asked myself, what can I do to help?” she said.
Aimed at children aged two to 10, Marley & Maverick Find Ethan’s Magic Legs is meant to be an inspiration for children. Proceeds from sales of the book support both the Faria family and the SickKids Foundation.
“Marley & Maverick Find Ethan’s Magic Legs is a wonderful book. We have read the story many times. It sits on Ethan’s bookshelf, and when he points to it, we will take it out. He notices [he’s the character in story] because the picture looks so much like him,” said Rachel Faria, Ethan’s mother.
“It would be so great to have this book in libraries and kids’ hospitals, and to have it accessible for children who may have gone through something like Ethan did, or who are missing a few limbs. The book is magical.”
A year after his ordeal, Ethan is progressing well.
“His skin is starting to look better and he has been fitted for prosthetics. His mom posts videos on social media of Ethan taking his first few steps. He is now starting to speak, as all of his development was delayed while in the hospital. He is just a super-happy kid,” said Anita Evans, a longtime family friend.
Leaving SickKids was the beginning of a new chapter for the Faria family.
“Ethan is the one who gave us all our strength to keep going. His smile alone will just melt you,” his mother said.
In the early days, Ethan was tube-fed and had a nurse with him 24 hours a day. He’s now in therapy at Holland Bloorview Kids Rehabilitation Hospital four days a week.
“We call his prosthetics his magical legs. At rehab, Ethan has been taught how to scoot on his tushie and how to crawl and get around,” Rachel added.
Ethan has music class at Bloorview twice a week, along with speech therapy. He loves animals and knows all the animal sounds. He loves listening to stories and turning pages in the book.
“I thank God everyday that he saved him. Ethan is going to do great things. We truly believe God saved him for a purpose, for a reason,” said his mother.
To learn more, visit www.ethansmagicbook.com.