Rays’ Rocco Baldelli Makes Dream Come True for Young Phillies’ Fan with Mitochondrial Disease

Rays’ Outfielder and New Jersey Teenager Share Illness that makes Their Muscles Stop Working

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Philadelphia Inquirers - Baldelli inspires Medford Youth

A shared love, a shared disease - Providence Journal

Nickelodeon Website - Tampa Bay Outfielder becomes  a role model for kids all over

PHADILELPHIA – Seventeen year-old Jamie Smith is a diehard Phillie Phanatic, but this World Series he is also “Rooting for Rocco,” Tampa Bay Rays’ outfielder Rocco Baldelli. The former little leaguer from Medford, New Jersey and Baldelli both suffer from a form of mitochondrial disease that starves the muscles of energy needed to walk, run and throw. Tonight, before the start of Game Three at Citizens Park stadium, the Shawnee High School senior had the chance to meet Baldelli, who has become a national inspiration to those diagnosed with the little known and often debilitating illness. 

“This is awesome,” said Smith on meeting Baldelli. “I read in the newspaper about Rocco and the pain in his legs. I could so, so relate. Sometimes, my muscles hurt so bad I can’t even open my eyes. Every time Rocco comes up to bat I cross my fingers and say a prayer. I hope Rocco continues to play well and hits one out of the park for me and all the others affected with Mito.”

 Mitochondrial Disease affects each person differently. In Jamie’s case, it causes extreme exhaustion and affects his ability to eat, requiring supplemental feedings via a gastrostomy tube. He also has chronic pulmonary issues and sleeps with bi-pap and oxygen. He has an enlarged heart, a bleeding disorder and has to be hospitalized every three weeks for infusions to give him an artificial immune system.

 Despite his illness, Jamie is a National Honor Society student and writes for his school newspaper. He also cooks breakfast for the homeless and is active with his church, Amnesty International and with the United Mitochondrial Disease Foundation (UMDF).

 In recent weeks, scores of people suffering from mitochondrial disease and their families have been posting heartfelt and inspirational messages for Rocco Baldelli on the UMDF Web site (www.umdf.org). Many of those “Rooting for Rocco” are parents, who have lost children to mysterious illness.   You can Root for Rocco too, by sending an email to root4rocco@umdf.org

“We are very thankful to Rocco, whose courage and perseverance is helping to raise awareness of mitochondrial disease,” said UMDF CEO and Executive Director Chuck Mohan. “Because it is so hard to diagnose, researchers believe mitochondrial disease is much more common than statistics indicate. Mitochondrial disease has also been linked to other diseases such as Alzheimer’s, autism and Parkinson’s.”

                                                                                                Photo taken by Rocco Baldelli

The 25th Annual LOVE RIDE is now history!   The Love Ride is the largest 1-day motorcycle fundraising event and took place on Sunday, October 26, 2008 in Southern California.  On Saturday, October 25, 2008, a 'Pre Love Ride' Party was organized by Linda and Bob Cooper.  The Pre-Love Ride Party raised $23,000 for UMDF for research towards a cure.

Here are some photos from the Love Ride.  The UMDF was named a beneficiary of the event!

Tonight Show Host and Master of Ceremonies for the Love Ride, Jay Leno, meets with UMDF Member EJ Fogel, his daughter Taryn, and UMDF Vice Chairman Sharon Shaw.  It was through Fogel's hard work in raising awareness that brought the UMDF to the LOVE RIDE as a beneficiary.

EJ Fogel, his daughter Taryn, with Willie G. Davidson and Davidson's wife.  Davidson, of Harley -Davidson, is the Honorary Chairperson for the Love Ride. 

Read Nick Cafardo's Story on Rocco Baldelli

Read Scott Miller's story on CBS Sports.Com about ROOTING FOR ROCCO on the UMDF Website.

The Washington Post features an article about UMDF Member Kathy Rivers of Ellicot City, Maryland in their "Medical Mysteries" article. Click here to read the story about Kathy's struggle to find a diagnosis for her and her children.  All have mitochondrial disease.

The story was also published in the Connecticut Post and in the Columbus Dispatch.

You can also hear Kathy tell her own story by watching this video  

After meeting with President Bush at the White House, Paralympian Joe Wise traveled to New York City to tdiscuss his battle with mitochondrial myopathy with Dr. Manny.  Wise is a tremendous representative of all affected with mitochondrial disease and the UMDF Wise, 15 years old and from Menlo Park, California, bested his own record by 9 seconds in the Men's 400mm Freestyle at the Paralympics in Beijing last month.   Wise placed 5th. Overall, the U.S. Swim Team secured 4 medals.  

Click here to see Joe's segment with Dr. Manny.

New York Times Reporter Alan Schwarz features three Boston Area children battling a mitochondrial disease and how Tampa Bay Rays player Rocco Baldelli is their inspiration.  Read the online version of the story here.

The Republican Newspaper also did a story on UMDF Members Lynn and 9 year old Zahra.  You can see the story online here.

Rays and Phillies in the World Series

Rays beat the Soxs 13 - 4  in game 4.

Read the story written by Providence Journal Sports Reporter kevin McNamara entitled "Rocco Baldelli's Return to Health Comes Full Circle at Fenway Park".

See Rocco's Post Game Interview here.

Hartford-Courant - Baldelli hits a 3 run homer.

Click here to read to story about the Ice Cream Fundraiser in Tennessee that raises awareness for mitochondrial disease.

If you would like to "ROOT FOR ROCCO", email your message to root4rocco@umdf.org.  Messages will be posted on the UMDF website.  View what others are saying by clicking here. Baldelli’s RBI Sends the Rays to the World Series

PITTSBURGH – The United Mitochondrial Disease Foundation (UMDF) congratulates Rocco Baldelli and the Tampa Bay Rays for clinching the American League pennant and urges baseball fans everywhere to root, root, root for Rocco in the World Series. UMDF has set up a special page on its Web site (www.UMDF.org) where people from around the country touched by mitochondrial disease have shared their own stories and posted messages of support for Baldelli. The Rays outfielder made a miraculous comeback late this season after announcing his  diagnosis of a  mitochondrial disease last spring.

“Rocco continues to be a shining ‘RAY’ of hope to all those suffering from this devastating and sometimes fatal disease,” said UMDF CEO and Executive Director Chuck Mohan. “Rocco’s candor about his health, his great courage and his huge successes are also helping to educate people about mitochondrial disease.”  

Every 30 minutes a child is born with a mitochondrial disease, which affects how the body processes food and oxygen into the energy needed to live. Adults who are affected can see their lives transform from healthy and active to debilitation. Because the mitochondria are present in nearly every cell in the body, the disease can affect any organ or body system at any age and is often misdiagnosed. Symptoms can include blindness, deafness, strokes, seizures, cardiac disease, liver disease, diabetes, the inability to digest food and extreme susceptibility to infection. Researchers have linked mitochondrial dysfunction to a range of other well-known diseases, including autism, Alzheimer’s, Parkinson’s and even cancer.  

Many visitors to the UMDF site thanked Rocco for being an inspiration and raising awareness of mitochondrial disease:

·        “We appreciate your persistence in the face of this mystery illness, and your patience in trying to explain it to others. We hope you have the series you've always dreamed about!  Best wishes, and thank you for never giving up!”

·        “My 15 yr old daughter has a mito disease but at the present time she is staying stable. It's not fun watching this horrible disease take away your child's life. You are a true inspiration for all those who suffer from mito. Thanks for getting the word out.” 

·        “I am the mother of a 13 year old boy who is about to have a muscle biopsy, and is looking at a mito disease diagnosis. I am a Bostonian and love the Red Sox, however when I heard your story. I could not help but rejoice for you and the Rays. You are an inspiration to our family. Thank You Rocco!!”

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