Dear Henry

When I read this story over the weekend it made me think back to when I wrote a proposal to the show While You Were Out that they come redo the basement as a cool classroom complete with a video link to your class at JPDS. You weren't allowed to be at school with your friends and I thought it would be a good way to keep you connected and make you happy.

This was before they did their Extreme Makeovers or whatever it is they do now for families in crisis or need. I had told them that it would make for more compelling TV than their normal shows which featured a wife remaking a favorite room for her husband while he was away playing golf for the weekend. Of course I never heard back from anyone.



Group builds sick kids space to heal
Sunday, December 2, 2007

By MICHAEL J. FEENEY
STAFF WRITER

PATERSON -- Antonio Reyes has spent much of his childhood battling serious illnesses in hospitals and has never had a space of his own.

But a group of local volunteers, dedicated to providing ailing children with an ideal bedroom, put the finishing touches on the 3-year-old's "healing space" at his city home on Saturday.

The scene at the home on Pennington Street was like watching the popular television show "Extreme Makeover."

About 10 volunteers worked together to put up blinds in the living room, organize toys in the basement and assemble beds in the two second-floor rooms. The group hoped to have everything done by Saturday night. The renovation had only begun about a week ago, but the planning began in October.

"We had a vision," said volunteer Linda Dumoff, whose son, Matt, and husband, Mark, founded Healing Spaces: "Straight from the Heart" in 2004 to give children who are fighting illnesses a room of their dreams. This is the third family they've helped.

Antonio has been "a fighter" since birth, said his mother, Desiree Janica, recalling that he was born almost three months premature, weighing only 1 pound 15 ounces. He suffers from Fanconi anemia, which leads to bone marrow failure.

His mother said he successfully received a bone marrow transplant on July 13, but recently became very ill and has been in intensive care at Hackensack University Medical Center for a respiratory illness and pneumonia. Earlier this year, he also broke his leg after falling off his sister's loft bed.

"He's doing OK," she said of Antonio's most recent hospital stay, which has gone on for more than two weeks.

However, Janica said he's often at the hospital because Fanconi anemia is treated like cancer and he has been given radiation and chemotherapy, which caused all of his hair to fall out.

Antonio was scheduled to check out his new room today, but his sickness has caused his return home to be delayed for about two weeks, said his mother in a phone interview from the hospital on Saturday. His stay in the hospital also caused the postponement of a trip to Disney World, which was granted by the Make-A-Wish Foundation.

"We were supposed to be in Florida," Janica said. "He knows he's getting a room. He says, 'I'm getting a Yankee bed.' "

Antonio's sports-inspired room screams happiness with freshly painted bright yellow walls, hard-wood floors, a comfy wood bed and matching dresser. The cornice over the window is made of navy blue and white fabric, in honor of his favorite baseball team, the New York Yankees. The custom-made cornice also serves as a display for two autographed baseballs from Yankee players. Chien-Ming Wang, Bobby Abreu, Ron Villone and Edwar Ramirez visited him at the hospital.

His bed is covered with a sports-themed comforter and sheets to match the custom-made ceiling fan shipped in from Florida with decals of baseballs, footballs and soccer balls on the blades.

One of the highlights of the room is the painting of the sun, which has a chalkboard center, allowing Antonio to live every kid's dream of writing on the wall.

Joyce Grabow, a Wayne interior decorator, worked on her first project with Healing Spaces after seeing an advertisement in a local newspaper.

She said she started by interviewing Antonio, who was wearing a Yankees outfit, to find out his interests and favorite things.

"I thought I would run with the sports theme," said Grabow, who decided on the yellow walls for his room because it's a "healing color" and a "happy color."

But, this family really touched the Dumoffs of Wayne and they decided to do a little more than just Antonio's room. The project expanded to tidy up the living room, basement, kitchen and a room for two his two sisters, which also received a drastic overhaul. His sisters, 18-year-old Shardee and 15-year-old Destiny, who gave up her room for her brother, will share a revamped room with pink walls, new furniture and a remodeled closet.

"I feel special because they are doing a little more than they would do a normal basis," said Janica. "I wish I could do something back to return the favor. I just thank them so much. Nobody has ever done anything for me. They are a blessing."

Mark Dumoff said the idea for the non-profit organization came to them while flying back from a spring break ski trip. He and his son read an article in a magazine, where a similar project was done for a child with cancer.

The article and photos of a bald child with a beaming smile inspired them to do something.

The Dumoffs got in touch with Tomorrows Children Institute for Cancer and Blood Disorders at Hackensack University Medical Center, worked out an agreement to meet families with children suffering from serious illnesses and the rest is history.

"The most important thing [for the child] is bringing healing to the home," said Mark Dumoff. "We try to create a very personal space."

Matt Dumoff, a sophomore at Montclair Kimberley Academy and co-founder of the organization, gathered volunteers from his school, Wayne Hills High School, and Tenafly High School along with family members and friends to complete the makeovers.

He described completing his first project in 2005 as "really emotional for everyone. It was an amazing experience. Your heart just stops. Once we did the first one, I just wanted it to grow."

The Dumoffs said they have been able to complete the life-changing projects by receiving donations from local businesses in Passaic and Bergen counties, including Sharp Electronics of Mahwah, which donated a flat-screen TV and air purifier for Antonio's room.

Mark Dumoff, who hopes to someday take this project around the country, summed up the experience: "The love they give to us is priceless. It's our honor. We are just a bunch of ordinary people trying to do something extraordinary for someone else."

E-mail: feeney@northjersey.com


And then I saw this today. How incredibly sad. I am sure Antonio was Dr. Gilio's patient. He must be devastated. Aside from the pain of their son's death, I wonder how much harder it is going to be to have that room in the house. What do you do with that?



Sick boy never sees 'Yankee room'
Monday, December 3, 2007

By BARBARA WILLIAMS
STAFF WRITER

Antonio Reyes will never get to see his new Yankees bedroom.

The Paterson boy, just shy of his fourth birthday, died Sunday morning, succumbing to complications from Fanconi anemia, a chronic illness that leads to bone marrow failure, said his mother, Desiree Janica.

Antonio was to be the recipient of a room designed and created by 10 volunteers from the non-profit group Healing Spaces. The dream bedroom, complete with wood bed and matching dresser, sports-themed comforter and sheets, and bright yellow walls, was finished Saturday.

The makeover was the subject of a feature in The Record on Sunday.

Initially, Antonio was supposed to see his room for the first time on Sunday. But his two-week battle with pneumonia and a respiratory illness that had him in the intensive care unit at Hackensack University Medical Center was dragging on and doctors told his family he would probably need another two weeks to recover.

"He was happy, just playing the guitar Saturday night," Janica said. "Then he looked at his dad and said, 'I love you' and that was it. They worked on him for 12 hours, but his body was just too weak."

Janica said Antonio died about 11:45 a.m. He would have turned 4 on Dec. 30.

Fanconi anemia is considered primarily a blood disease, but it can affect all systems of the body. Many patients eventually develop leukemia or some type of cancer. A successful bone marrow transplant cures the blood problem, but patients must still have regular examinations to watch for signs of cancer.

Treatments for FA symptoms such as bleeding and infections include transfusions or antibiotics. But patients frequently suffer with fatigue, shortness of breath, chest pain or dizziness and must see a multitude of doctors.

Antonio, whom his mother described as "a fighter," endured a successful bone marrow transplant on July 13, but he has been in and out of hospitals since birth, when he arrived almost three months early and weighed only 1 pound 15 ounces.

Regardless of the discomfort and pain from his illness, Antonio didn't complain much, Janica said. Rather, he was frequently "the life of the party. He was always the center of attention. Always happy. And always wearing his Yankee cap," she said.

Only hours after Antonio died, Janica entered her house for the first time since the renovations were completed.

In addition to her son's room, the group completely renovated a room for Antonio's sisters, and touched up the family's living room, basement and kitchen.

"It's just beautiful -- they did such a fantastic job," Janica said. "He would have loved it. He was really looking forward to seeing his Yankee room. Now at least I'll have somewhere to go to be near him."

This is the third family Healing Spaces had helped in North Jersey since 2005. Started by Wayne resident Mark Dumoff and his son, Matt, the group strives to give children dealing with serious, chronic illnesses a room of their dreams.

On Sunday evening, Mark Dumoff said they were shocked when they heard about Antonio's death.

But he said he hopes that the space they provided for Antonio's family will help them "get through this difficult time.

"Our prayer is that the healing we brought into this home extends to them during this difficult time and gives them the resolve and strength to go on."

E-mail: williamsb@northjersey.com