September 19, 2014 , Friday, 7:00 pm - 10:00 pm
Foundations & Inspirations
Speaking and Book Signing
Dragon Fly Farms Garden Center & Florist, Hamilton, NJ


September 23, 2014 , Tuesday, 7:00 pm
Speaking and Book Signing
Robbinsville Library
42 Robbinsville-Allentown Road, Robbinsville, NJ


October 17, 2014 , Friday, 7:00 pm - 10:00 pm
Foundations & Inspirations
Speaking and Book Signing
Location to be announced


Monday Evenings , 7:00 pm - 8:00 pm
Everything Special Needs with Sue Shilling
Speaking and Book Signing
WNJC 1360am Radio


NSCIA Webinar
Raising a Child with Special Needs: A Mother’s Story 7/23/14
National Spinal Cord Injury Association Webinar

 


Conference

WE WANT YOU! By MaryAnn Raccosta

FOD/OAA National Metabolic Family Conference

Arlington, VA June 25-26, 2014


Sixteen years ago a courageous woman sought to advocate for the screening for all babies, because her son died on Mother’s Day — from a disorder that could have been detected … and treated.  She is a hero and still is a positive force that advocates for newborn screening of all babies, “one foot at a time.”


One would think that with the advancement of medical and communication technology — that all states across the country would be the same – and the knowledge of these rare disorders would be common —. and the screening process streamlined, but it is not.


I had the pleasure of attending the FOD/OAA National Metabolic Conference held in Arlington, VA.
Not only was I filled with gratitude to see other families and representatives wanting to share their personal story but I was overwhelmed to see that much awareness and education still needs to be done. The message was completely clear: We want you!


The numbers for individual mitochondrial disorders are extremely small, yet collectively, the rare disorder population is growing. Twenty years ago, our children were not surviving, but today, “Our babies are now being saved. They are growing and living out lives – reaching milestones, being educated and transitioning to young adults. The screening process is better – but there still is much to do. We must unite and help spread awareness so that the entire country knows and understands.” Treatments and information about rare disorders needs to be as common as awareness for childhood cancer, or diabetes or autism.


My boys, both of whom are affected with a very rare inborn error of metabolism, Trifunctional Protein Deficiency, were forerunners years ago, teaching doctors by their responses. I read about coma, death and cognitive impairment.  Today, I enjoy their milestones and advocate for other special-needs families.


Organizations exist to promote awareness, to review of the screening processes, to educate physicians and families and to provide research, yet we need more advocacy. Save Babies Through Screening (www.savebabies.org), Fatty Oxidation Disorder family support (www.fodsupport.org), Organic Acidemia Association (www.oaanews.org), Global Genes (www.globalgenes.org) and United Mitochondrial Disease Foundation (www.umdf.org.). We need your support!

 

I came away from the weekend with extreme gratitude for the organizations that work diligently to provide information and funding. Please share and spread awareness and whenever possible think about these organizations for your charitable contributions. We want you…and we thank you for your support!



Videos

Catholic Corner

 



Links

Children's Hospital of Philadelphia

Family Support Group

Gift of Life Family House

Save Babies Through Screening Foundation

Make-A-Wish New Jersey

Make-A-Wish Philadelphia

 



Past Events

April 12, 2014
Princeton Local Author's Day Princeton Library, Princeton, NJ

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March 27, 2014
Gift of Life Center, Philadelphia, PA

Group
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February 12, 2014
St. Andrews Church, Bordentown, NJ

 



Reviews

Jim Gleason, heart recipient
Don't even try to imagine what your life might be like if you had to face what MaryAnn and Jim Raccosta describe in this beautiful story of a family challenged with raising three children when two of them are diagnosed early on not only with rare, but also with another extremely rare medical condition. Their secret? A strong faith in God and His plan for them supported by an amazing medical staff at Children's Hospital in Philadelphia and a final blessing of a strong marital relationship that grows stronger as they are forced to work together to keep those two boys alive time and time again.


MaryAnn shares her soul and heart throughout, inviting the reader into their daily family life, from days of routine - a routine very different from what the reader might expect from their own "normal routine" - days that can at any moment turn into another dash to the ER and a hospital admission to save a young life, again and again, with no rest for the weary. Her writing takes the reader on a roller coaster ride of emotions, alternating between that daily routine and death defying episodes where the reader's heart will stop - as the family's did - at those crash cart moments in the crowded hospital room filled with medical staff performing another miracle lifesaving. And so we share their life for ten years, a life that continues on to this day, with the boys growing under the loving care of MaryAnn and Jim, inspirational parents that will leave you in tears with their devotion to not only the three children, but to themselves and their faith in God's plan. See them as they strive to provide a normal life for the older daughter while staying so focused on caring for the two younger boys, a balancing act few can truly identify with in their own family child raising years.


What also comes through in her story is the dedication of the Philadelphia Children's Hospital staff that go beyond their professional responsibilities to connect with this family in a loving, very human way that grows over the years, extending beyond an assigned shift of patient care, returning again and again even after those professionals have moved on to other often distant assignments.


For those facing their own family medical challenges, this is an inspiring read of faith and hope. Medical professionals will benefit from seeing what goes on beyond the hospital room, not only in the home and other physical settings, but deep within the hearts and minds of the family dealing with that daily life challenge so beautifully captured in this amazing book. Thank you, MaryAnn and Jim, for allowing us inside your heart and lives, a truly unique gift from your hearts to all who are blessed in reading this very special book.



Jim Gleason, receiving his own heart transplant Oct. '94, retired after 37 years with Unisys Corporation in 2005, is a volunteer with The Gift of Life Donor Program, NKF and UNOS as well as a nationally recognized speaker and author. His own book, A Gift from the Heart, is offered free in thanks to his donor family and can be obtained by contacting him at GLEASONJIM@AOL.COM.



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Please e-mail MaryAnn at maryann@thesurvivortheherotheangel.com

 

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For more of MaryAnn's inspirational writing – visit Amazon and purchase a copy of her story. A gift for all that read it. And, if you have read it, please place a review on Amazon or my facebook page.