A smile to defy the odds

Raven Reitano of Carver (left) with her little sister, Athena, and family friend Susan Sayce. A writer, Sayce helped Raven put her feelings about coping with a loved one's illness into a children's book, "Still Smiling." Athena has metachromatic leukodystrophy. (REITANO FAMILY)

When Raven Reitano's little sister, Athena, was diagnosed with a terminal disease three years ago, she had many questions with few answers.

"I was wondering why she was sick and why doctors couldn't help her. I wanted to play with her like I used to," said Raven, 9, of Carver.

With the help of family friend Susan Sayce, Raven has put her feelings in a book, "Still Smiling," aimed to help children cope with a loved one's illness.

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

Similar to Lou Gehrig's disease (ALS), it causes loss of all muscle control and blindness.

MLD can affect people at any age. Life expectancy in young children is less than six years.

Sayce, who dabbles in creative writing as a hobby, said she was lying in bed one night when she came up with the idea of writing a children's book "through Raven's eyes."

"The idea just popped in my head, so 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 said the book fills a void in children's literature. "There are books on death, divorce, and other issues, but not for young children living with a sick brother or sister," Renee Reitano said.

"It was scary for Raven to see what her sister was going through," she said. "This book deals with questions kids want to ask but might be afraid to because they know it might make their parents sad.

"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 self-published 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," Renee 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 such subjects as feeding tubes and why doctors cannot always make someone better. Answers are presented with simple, upbeat illustrations by the Reitanos' friend John Ferriera Jr., who donated his talents.

"The book makes it less scary for kids in this situation," said Renee Reitano, and helps children understand "that even though their brother or sister is sick, their life will go on and they will be OK."

When Athena was diagnosed with MLD at the age of 3, doctors told her parents she would most likely not live past the age of 5.

In August, Athena celebrated her 6th birthday and is in a race against time as researchers home in on a cure.

Researchers in Denmark have created a synthetic enzyme, replicating the one MLD sufferers like Athena are missing. It can be injected into the body and help rebuild the myelin sheath surrounding the nerves, which is destroyed by MLD.

"They are moving into phase one of the study, and we're told that if the trials are successful, they could be in phase three by January, and Athena could get into that," said her mother.

"We're hoping and praying she gets the treatment. It's already cured animals with the disease. There is going to be a cure; it's just a matter of time."

Proceeds from the book go to fund research for MLD. Because there is virtually no government funding for the cause, she said, "it comes down to families raising money."

As the Reitanos pray for Athena to remain healthy enough to make the study, they are fund-raising through their nonprofit foundation, "Athena's Hope," and reported having contributed $55,000 to MLD research. They also started an aluminum can tab drive, which has spread to surrounding communities. Each month, Renee takes the tabs to Conway Scrap Metals in Whitman, where they are sold for 37 cents per pound. Renee said the tabs raise about $50 a month.

"It might not seem like a lot, but it all adds up. Every little bit helps," Renee Reitano said.

Sayce and Raven are planning a book-signing tour at area hospitals and clinics hoping to talk with children dealing with the same issues as Raven.

Raven said she would tell them to never to give up hope.

"It's scary when it happens, but it gets easier. 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."

The book, which costs $10, can be purchased at www.AthenasHope.org. Donations of aluminum tabs are accepted at the Carver Fire Department, Muckey's Liquors on Route 44 in Lakeville, Sudbury Farms on North Main Street in Randolph, Sovereign Bank in Pembroke Center, and Millie's Lunch in Whitman. Athena's Hope also collects Shaw's Supermarket receipts; for every $5,000 collected, Shaw's donates 1 percent to MLD research. For more information visit www.AthenasHope.org or call 508-866-7622.