People & places: Ill sister spurs young Carver author



By Kelly Fernandes, Enterprise Correspondent

CARVER— When Raven Reitano's little sister, Athena, was diagnosed with a terminal illness three years ago, she did not understand why doctors could not cure her.

“I wanted to know why she was sick and I wanted to play with her like I used to,” said Raven, 9.

This year, Raven put her feelings in a self-published children's book, “Still Smiling,” aimed at helping children cope with a loved one's illness.

She wrote the book with the help of family friend Susan Sayce.

Athena, 6, suffers from metachromatic leukodystrophy (MLD), an extremely rare, progressive neurometabolic disorder affecting about one in 100,000 people.

Similar to Lou Gehrig's disease, MLD causes loss of all muscle control and blindness. It can affect people at any age, but life expectancy in young children with the disease is less than six years.

Sayce, who enjoys creative writing as a hobby, came up with the idea of writing a children's book “through Raven's eyes.”

“I wanted to do something for Raven, Athena, the family,” said Sayce.

“It sounds crazy, but I actually got the idea while lying in bed one night. I got up and started writing it out and then showed it to Athena's mom and Raven. Raven and I worked on it together and she changed certain things,” she said.

Raven and Athena's mother, Renee Reitano, said the book is necessary because when Athena became sick, she was unable to find books to help Raven.

She said Raven has already received letters from children, thanking her for writing the book.

“There are books on death, divorce and other issues, but not for young children living with a sick brother or sister,” Reitano said.

“It was scary for Raven to see what her sister was going through. This book deals with questions kids want to ask but might be afraid to because they know it might make their parents sad. Children sometimes hold their feelings in,” she says, “and that's not good for them. Athena's sickness is a subject that makes us cry, and Raven knows that, but it's OK to cry and get it out. We might not have all the answers, but this book gets those questions out there.”

The 15-page book is titled “Still Smiling” because it is the one thing Athena can still do.

“She can't give us much emotion because all her facial muscles are gone,” Reitano said, “but every once in a while she gives you a little smile and we do cartwheels over it. It's amazing how much you appreciate the little things.”

“Still Smiling” addresses issues that might be scary for young children, such as feeding tubes and why doctors cannot always make someone better.

The book offers explanations in a positive manner and features simple, upbeat illustrations by the Reitanos' friend John Ferriera Jr., who donated his talents.

“In every page, the people are smiling and happy and all the colors are cheerful,” Reitano said. “The book makes it less scary for kids in this situation. We wanted this to be easy for children to read and understand and make them realize that even though their brother or sister is sick, their life will go on and they will be OK.”

The book costs $10 and can be purchased online at www.AthenasHope.org. All proceeds go to Athena's Hope Inc., a non-profit corporation the Reitanos formed to fund research for the treatment and/or cure of MLD.

“It's all about money and time because there is virtually no government funding for MLD. It comes down to families raising money,” Reitano said.

Sayce and Raven are planning to visit area hospitals and clinics to share the book with children dealing with the same issues as Raven.

“I will tell them never to give up hope that their loved one will get better,” Raven said.

“It's scary when it happens, but it gets easier and I know my sister loves me and I love her. I believe that a miracle will happen. We will never give up hope and I hope we get a lot of money to find a cure.”

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