Uncle Dan and Cousin Hannah just made it to their 50th state and 39th state capitol. This is a picture of them after landing in Helena, Montana. Way to go!

Macomb Daily : Afflicted children get support 06/16/08



Fabrizio DiMercurio, 9, is afflicted with a rare disease called Fanconi anemia. He annually attends a camp for seriously ill children called Camp Sunshine in Maine. On June 21, Hattie and Bart Rowe will host a fundraiser at their Clinton Township Tropical Smoothie Cafe to benefit Camp Sunshine.

Afflicted children get support

By Frank DeFrank
Macomb Daily Staff Writer

Antonio and Marie DiMercurio of Macomb Township have two families.

Their immediate family includes daughters Alessandra, 10, and Adriana, 2, and son Fabrizio, 9.

Their second family includes the children, men, women and volunteers they visit every year at a place called Camp Sunshine in Maine. At the camp, children, like Fabrizio, who suffer from serious illnesses gather to forget their troubles and be kids for a few days.

If the respite from doctors and treatments is good for kids, it might be even better for the adults.

"We talk to each other," said Antonio. "We get to express our feelings with one another. It's like a big family."

At birth, Fabrizio was diagnosed with an affliction called Fanconi anemia, a rare, inherited blood disorder that leads to bone marrow failure. Because of the affliction, Fabrizo was born without thumbs and with incomplete bone structure in his arms.

But you wouldn't know it. He bounces around like other 9-year-olds at Shawnee Elementary School, and at Camp Sunshine he plays golf, takes boat rides and enjoys his favorite part: "Swimming in the lake."

Fanconi anemia is so rare, only about 3,000 people worldwide are afflicted. Fabrizio's life includes regular blood tests and trips to Cincinnati at least once a year, sometimes more, for treatments.

And for the past six years, the family has traveled to Maine for a few days at Camp Sunshine, where the kids play and the parents learn the latest medical information about their children's afflictions.

"When the children are out doing their activities, we're in with the doctors," said Marie.

But spending time with other families is the best part.

"We get to socialize with the other families and we're all in the same boat," Marie said. "You can't put worth on that."

Camp Sunshine is free to families with ill children, though they must pay their own transportation costs. This year, the DiMercurios are one of five families in southeastern Michigan whose trips to Camp Sunshine are sponsored by Tropical Smoothie Cafe.

"I'm just amazed by their strength and their hope," said Dianne Lemieux, area developer for Tropical Smoothie Cafe. "I can see the difference (the camp) has made in their lives."

Because Fanconi anemia is rare, few even know about it. The DiMercurio family has taken on the responsibility of raising awareness about the affliction as well as participating in fundraisers.

"You take a negative and try to make it a positive," Maria said.

Bart and Hattie Rowe own the only Tropical Smoothie Cafe in Macomb County. Located at 40777 Garfield, just south of 18 Mile Road, in Clinton Township, the Rowes and their store will participate June 21 in a fund-raiser for Camp Sunshine called National Flip Flop Day.

The first 500 customers wearing flip flops will receive a free Jetty Punch smoothie. But the Rowes hope those and many more customers that day will offer financial support for Camp Sunshine.

"Take up donations and bring them to us," Bart said.

For more information about the fundraiser, call the Rowes Tropical Smoothie Cafe at (586) 477-2777 or visit the Web site www.nationalflipflopday.com. For more information about Camp Sunshine, visit www.campsunshine.org.

Our own Stoddert makes it to the big screen. This is an excerpt from a documentary called, Ready to Play.

I am pretty sure we spend more time at Stoddert than inside our house. You definitely ruled the soccer field when you were on the Dolphins. Joe is also good at soccer but refuses to play. He is very focused on baseball.

Your littlest brother also insists on watching all of the Glover Park softball league games. I seem to remember that you were the same way. Mom thinks it is strange that I've never played in the league. One of Joe's coaches is on a team and has asked if I can come over if they are ever short of players. That will be fun.

The filmmaker, Jennifer Crescenzo, was kind enough to let me post this.

Enjoy.

I am the happiest, most fortunate, saddest dad around. You and your brothers make being a dad the easiest, most wonderful thing anyone could wish for.

Here are the cards that Joe made for me and the one Jack did on his computer.

Your little brother strokes a double!



Luckily, baseball allows Joe to pursue his love affair with dirt. I think he is only in it for the acrobatic dives and stops. Gravity has a strong pull on him. By the end of the game he looks like he auditioned for a detergent commercial. For Joe, winning isn't any way as important as getting dirty.

I've gently explained that over time he'll learn that all of the rolling around isn't the most efficient or effective way to play defense. Interestingly, we were listening to XM's baseball channel and heard Tommy John, the former Yankee pitcher, say that he never saw Joe DiMaggio dive for a ball. DiMaggio was so fast he'd get to the ball hit to the outfield without any SportsCenter worthy dives.

I can remember another time when I was listening to stories about Joe DiMaggio on the radio. I was driving from the UPS place east of Minneapolis after shipping boxes of all of our stuff home. The author of a book about Joltin' Joe was being interviewed about the Yankee great and it sounded like his life was not a very happy one.

Maybe he needed to get his uniform dirtier.

RBI



It is sometimes easy to forget that he is a 6 year-old playing with 9 year-olds.

Today was wall-to-wall sad. In the morning we went to JPDS to watch your class graduate. I felt incredible pride watching Ari graduate. He is so handsome. Each person in the class got up and said something. They pretty much thanked their parents and talked about how much fun they had on their 6th grade trip to New York. Kerren Segal, in her remarks, said:

"If I could wish for one thing to change about my years at JPDS, it would be that Henry Goldberg could have shared in more of our wonderful memories."

That was sweet. When it got to the presentation of the gift from the class, they showed slides of you and last week's dedication ceremony. Here's a shocker. I cried. So did Mom.

After graduation I saw a friend of mine, someone who I don't see very often, in the hallway as I was getting Joe so we could go home. She asked me if I went to graduation - if I had anyone graduating. I said "no."

Later in the day we heard that this guy named Tim Russert died. He is in this picture of Mom, me and your brothers at the Nat's game. His seats were right behind the XM seats. His son, Luke, had a show on XM and is a really sweet guy. I'd say hello to Luke at XM and when I saw him at Nat's games. I never knew his dad.

This picture - which was taken by my very versatile and talented friend Lou from XM - is the screen saver on my computer. Has been since last year.



This is all very sad. Sunday is Father's Day and Tim Russert was the unofficial patron saint of the holiday. He wrote two books about fathers and sons. He really loved and respected his father. In his first book he wrote about what he learned from his father, Big Russ.

I remember a story that Tim Russert would tell about how Luke came home one day with a tattoo. Tim was pretty furious about it. Then Luke showed his dad what he had tattooed and it was his dad's initials. He did that so his dad would always be with him.

Baseball comes easy. Swimming and being in the water not so much. This is what Joe is mighty, mighty proud of.



Here is what is amazing about your little brother.

Today he had "Water Day" at school, which means he basically ran around getting soaked all day. After school let out he went to his swimming lesson at the JCC.

Then when he got home he went to go play tennis at Volta with Meg, our babysitter for the summer - she is a nursing student at Georgetown.

Then when he got back he asked if I would go to Stoddert to play catch with him. This is at 7:30 pm and he'd been in motion all day with very little food in his belly. When we got to Stoddert, he ditched me to play soccer with another family who we see there from time to time. After that family left at a little after 8 pm he got around to fielding grounders and hitting balls with me.

We finally got back in the house at 8:40 pm and he wasn't tired or ready to stop. He is a human perpetual motion machine. I am thankful for him getting me outside to do physical things. Hopefully I'll be able to keep up with him for some years to come.

Last night Joe had his last game with the Pirates. They lost in the playoffs to a really good team.



Just before I started filming Joe getting his trophy, his coach, Seth, said, "And once again, Joe Goldberg was our best player, the MVP of the team." That is saying a lot because the team and the other players are getting very good.

Both Mom and I are bursting with pride for Joe. He works very hard at baseball and it is nice when the hard work gets recognized.

I also just came across the picture of you and your cousin Rachel. She was adorable then and you'd be quite taken by how beautiful she is now.

Found this when cleaning out the garage this weekend. I don't think in the almost 13 years we've lived in the house that we ever parked a car in the garage. Now the Defender has a home.



Jack leaves for camp in about one more week. Joe is playing baseball at Home Run all summer. Oh, and we joined a pool! Mom and the guys went twice this weekend. I was busy cleaning the garage so I only got to meet up with them late yesterday afternoon. It is the pool that Mom went to when she was a girl. That kind of thing makes it all the more special.

Last night Mom and I went to a small party to celebrate our friend MB's 5th birthday. As you can guess, she isn't really 5 years old. It has been 5 years since her transplant. And she is doing great. Her husband and our friend Hugh arranged it. He bought all of these birthday cards for 5 year old kids which was very cute.

I see MB a lot, but last night I asked her what life is like knowing that she almost died and that it is a bit of a miracle that she is alive. She told me that sometimes it is overwhelming. She also told me that there are times that she worries she may get really sick again. I cannot imagine what it is like to walk around with all that stuff peaking through every now and then. It must be a bit like how we've incorporated into our everyday lives the grief of you dying.

I was honored to be there last night for that incredibly special occasion. I also thought to myself going in that the night was about MB and I shouldn't "bring you up," even though of course the whole transplant thing makes me think of you and wish we could be having the same kind of celebration next month for your 8th anniversary. I didn't say the word "Henry" until very late near the end of the party when I was sitting talking to Hugh and MB. It was only because I have this need to talk about you and because I was reporting back on something that happened during the dinner.

A woman came in to the dinner late and sat down next to me. She explained to me that she and her husband were late in getting there because they were attending their daughter's dance recital at Walt Whitman High School.

And you know the one and only time I have been to Walt Whitman, the rival of my high school, Winston Churchill, was to drop you off for Bella's dance recital.

That whole day when you went with her family to watch her dance - I think you got dressed up in a jacket and bowtie - and sat there so attentively as she performed - is one of my fondest memories of you. I think Mom has written about that day for her book.

What I didn't mention to Hugh and MB was that I had just worked on this video of you for the garden dedication that was shown just two days earlier. I am glad the movie ends on the video of you going to Bella's house, also dressed up, ready for a date. I have to say that it is pretty adorable and hilarious that you gave Liane the flowers you bought for Bella.



I had wanted to invite Hugh to go to the garden dedication but Mom made me feel that it really wasn't an event for our friends who aren't part of the school - that it was something expressly for the JPDS community. She was right and I understood. But as I explained to her, Hugh is part of an incredibly special (to me, at least) and small group of Ari, Linda, Jake, Uncle Bill, Dr. Gillio, Dr. Wagner, Liane and Bella and a few others (who aren't family) who really, really knew you and really, really love you. The interesting thing about Hugh is that he is part of that group, but he never knew you when you were alive.

Mom and I agreed that the dedication ceremony provided a lot of folks who didn't know you when you were alive (but know of you) a chance to understand how extraordinary you were, and why G'veret Koss and your classmates wanted to create a garden to honor your memory.

I didn't speak to the crowd at the Garden dedication, but if I had I would have thanked your teachers, Mrs. Berliant and Mrs. Singer. We've been lucky to have them be teachers for you, Jack and Joe. I did say something to Mrs. Berliant when we went outside to see the Garden. She then told me a little story about you. She said that one time you came back to school after having been out sick or in the hospital for a number of days. You and your classmates were coloring. Someone said they needed a red crayon to complete their drawing. You immediately jumped up and offered them the red crayon you were using. That was you. That was your big red heart.



I don't know why all of the flyers I make with blue writing turn red when I put it on here. That is what happened with the program I made for the dedication ceremony. And though you didn't look all that great, your weren't purple!

Aunt Abby is kindly donating a bench for the garden. Mom and I asked Jane's brother Ted to make a sign for it like the sign he made for the Knob. I showed you that when we visited her and her kids in Cleveland back in April. Your grandparents are donating a birdbath. With all the plants, it is going to be quite something when it is all done.

Here are pictures of the designs for the signs.



I look forward to visiting your garden a lot. I think it will be a peaceful place to rest.

Yesterday was a toughie - maybe one of the toughest in the last 5 years. First thing in the morning we went to Joe's kindergarten graduation (I told Mom that I only recall graduating from high school and college - who invented these other ones?); then off to the cemetery for some time at your gravesite; and then back to JPDS for a special ceremony to dedicate Henry's Garden.



When I was at Joe's class, one of my friends, Jeannie, asked me if I felt "mixed emotions." I just kinda shrugged, but inside I was thinking,

"Nothing mixed about it. Totally and terribly sad. That's it."

Sure, I was psyched for Joe, but the Henry Garden dedication and the knowledge that your class of 2008 was "graduating" from JPDS without you has been chipping away at what is left of my heart. One of the things we used to hear after you were born were estimates of how long you'd live with school grades as benchmarks. You wouldn't live past kindergarten or first grade was what I think we heard most often. So these school milestones -- Joe leaving kindergarten behind and your class leaving JPDS -- has made me very sad.

The cemetery was less than peaceful. I think that is how they describe cemeteries - as places to reside peacefully for eternity. The construction of the Christian School of Washington is getting near the end, but the backhoes and pickups still are making a pretty big ruckus. Hopefully by next fall the school will be done, be open and all we'll hear is the laughing of the kids at school.

There was a story on the Today Show yesterday about the Pearls meeting their donors. This was a great thing to happen (looks like thanks to the Frohnmayers). A lot more people will know about Fanconi - though no-one ever seems to be able to pronounce it right.

I told you that Cousin Hannah was getting a new Bedlington Terrier. Well, here is "Lilly."



I suggested the name "Falafel" but that wasn't girlie enough. I thought it would be a great name to go along with their other dog, Kasha. Oh well.

Hey, this is another of the photos that I've been meaning to share with you. Here is Hannah, Aunt Jen and Uncle Dan on their Passover break, which they spent in Hawaii. I don't know what is more amazing - that Aunt Jen got certified to scuba dive or that you can eat kosher for Passover in our 50th state.

Mahalo.

This is a cool pic of Jack reading Torah. Nice that he is sporting his Rolling Stones shirt for the honor.



Helaine asked me if I would read Torah at Jake's Bar Mitzvah. I was blown away. The date is October 25. Based on Hannah's Bat Mitzvah, I think I'll be able to do it without crying. But since it'll be the double-whammy of sharing the bimah with your buddy Jake and your 13th birthday, I am guessing it will all be pretty emotional.

Lorenzo Odone, 30; Struggle Inspired 'Lorenzo's Oil'

Lorenzo Odone, 30; Struggle Inspired 'Lorenzo's Oil'

By Martin Weil
Washington Post Staff Writer
Saturday, May 31, 2008; B06

Lorenzo Odone, 30, whose story of illness, impairment and the determined effort by his parents to save his life were depicted in the 1992 movie "Lorenzo's Oil," died yesterday at his home in Fairfax County.

His father, Augusto Odone, said that Mr. Odone apparently died of aspiration pneumonia, which can result from a foreign material inhaled into the lungs.

Mr. Odone had been severely disabled by a genetic disease known as adrenoleukodystrophy, or ALD. The rare ailment principally afflicts males and usually results in brain failure and death.

Augusto Odone said last night that his son had always been brave and that "everyone who knew him was crying at his death."

He emphasized that his son's death was "not the result of the disease."

The movie "Lorenzo's Oil" portrays the father's discovery that ALD patients could be helped by a derivative of olive and rapeseed oils.

In an interview last night, Augusto Odone said that an article in a scientific journal asserts that if the treatment is given before symptoms develop, children can escape the effects of the disease.

The discovery came too late for Mr. Odone, who was condemned to silence by what appeared to be the irreversible neurological effects of the disease.

After Mr. Odone's condition was diagnosed more than 20 years ago, his parents learned that children typically lived only a few years after diagnosis. They declined to accept that fate for their son and began searching for a treatment.

The treatment they devised came after hours of poring over obscure scientific journals and obtaining the counsel of many specialists. Although some experts said that the oil might be dangerous, the parents, noting their son's rapid deterioration, decided to take a chance. Augusto Odone credited his son's years of survival to the treatment.

Mr. Odone's mother, Michaela, who joined her husband and nurses in providing their son with constant care, died in 2000.

Augusto Odone said last night that he intended to have Lorenzo cremated so his ashes could be mixed with his mother's.

In addition to Mr. Odone's father, survivors include a brother and a sister.

I went with Joe to his Pirates game yesterday. At one point when Joe was playing first base I yelled to him from the third base sideline where all the parents were camped out. I do shout out a lot of encouragement and "fine tunings" like "Joe, move over" or "play shallower" or "Joe, wake up" and stuff like that.

This time, I yelled,

"Henry..."

As soon as I yelled your name it registered in my brain and I just closed my mouth tight. I looked left and right at the parents next to me to see if anyone noticed what I had done. There is a Henry - Henry Sosland - on the team (he goes to JPDS) so it wouldn't be too bizarre for me to yell that name. But Henry wasn't there yesterday.

No-one noticed. I was confused.

Your brother Joe is playing on Uncle Andrew's Babe Ruth team in Takoma Park with cousins Josh and Sam. How great is it that all three cousins are teammates. The team and the competition are mostly 9 year olds, so Joe is both way younger and smaller than everyone else. But his level of play is right up there. I went with him on Saturday morning and he hit two balls out of the infield on the fly and ended up with a double each time he was at bat.

The game was at a field in Takoma Park right next to the fields where I used to umpire for Uncle Andrew back when you were alive. That was the Babe Ruth league too. I had forgotten that I used to do that. I wore a chest protector but I don't think I wore a blue shirt or uniform.

Uncle Andrew is a really good coach and teaches Joe and his teammates well. In addition to playing for Coach Seth and the Pirates in CapCities Little League, this will be a positive experience for Joe.



One of the coaches who works with Uncle Andrew on the Takoma Park team is a guy named Alan Kanner. There is a photo of Joe with Alan when Joe was on third base. I used to work with Alan at a law firm back in the early 1990s.

When Joe and I were leaving the game I ran into a guy named Vivek who I worked with at VarsityBooks.com in the late 90s. His son had a game on the same field right after Joe. We hadn't seen each other in years. I think you were alive the last time I saw him.

It is a small world, and I like it that way.

I had a few pictures that I've been wanting to share with you. This is a picture of you and Big Papi that I took off a video of the Nightline episode about you. I was so excited to show the video to joe. There is a part where you are hitting balls off the porch. I had forgotten how we used to do this. In the video that ABC shot of us before a Twins game in Minnesota, Davd Ortiz, who was on the Twins back then, asks you what you want to be when you grow up.

"A baseball player."

I forgot that too. Joe would say the same thing if you asked him.

What Big Papi says right at this point is,

"Here's a special bat for a special friend."



This next one shows what the National Cathedral looked like the weekend of Michael and Rachel's B'nai Mitzvah. Mom, Jack, Joe and I drove by the Cathedral after Friday night services at Washington Hebrew to see how an artist had lit it with special lights. Cool, huh. Wish they could do it more often than just one weekend.



And then there is a photo of you and Linda having a great big hug. I was looking through videos to get stuff for a short presentation during the Henry's Garden dedication. This was really sweet. I should use it dontcha think.