Dandy Kids Documentary

Dandy Kids is a documentary about families who share their life experiences of looking for answers from a limited number within the medical community. Over and over again families struggle to find answers for a diagnosis for which the cause and treatment are not known. Many are told pregnancies should be terminated, and that the prognosis is hopeless. Dandy Kids will depict the experts, advocates, and ultimately the Heroes who by way of faith, perseverance, and unconditional love live life to the fullest every day! Many times this is done minute by minute, second by second, and in the research labs chromosome by chromosome. This documentary is being made in conjunction with Congress, Researchers and those families effected by the various types of Dandy Walker malformations, to promote research and raise awareness, and give HOPE!

One boy's Aunt connects with families around the world in search of of what it means to live with the many faces of Dandy Walker Syndrome, and how she can help those receiving a diagnosis to look for answers.

Denver made Dandy Kids Documentary gives HOPE to families around the WORLD!

We are excited to announce the DVD Release of the Award Winning Documentary Dandy Kids. Dandy Kids tells the story of children diagnosed with a rare brain malformation called Dandy Walker Syndrome. When Dandy Kids Director and Executive Producer Darla Rae set out to document the accomplishments of her great nephew Hunter who was diagnosed in utero, she never dreamed it would become a project that would impact her life forever.
“There is not a day goes by, that I don’t receive an email or phone call from a parent so desperately wanting more information, or at least the ability to talk with someone who understands, or can be a voice of HOPE, I also receive calls from those in the medical community wanting to learn more. They come in from all over the world”, said Rae.
Dandy Kids not only tells the story of Rae’s family, but other families from around the world who share their experiences as, well. It stars Hunter, Maddie, Nathan, Seth, Samuel, and Ryan. Ryan’s parents Eric and Andrea Cole campaigned on Capitol Hill garnering support from Congress to support research for Dandy Walker Syndrome, and Eric gave a compelling testimony before Congress which can be seen in Dandy Kids. Eric Cole founded The Dandy Walker Alliance. The bottom line is Dandy Kids gives Hope! It will raise awareness and educate other families and those in the medical community who are looking for answers.

It features interviews with Members of Congress, Medical researchers, and physicians who have experienced children with Dandy Walker Syndrome, first hand, including World renowned pediatric neurosurgeon Dr. Benjamin Carson from Johns Hopkins. In an interview with Dr. Carson he said “Your efforts will preserve lives” “That was amazing to hear him say that. It makes all the work worth it”, said Rae.

Dandy Kids screened before Congress and congressional staffers in April 2008, and helped to encourage others on the Hill to support appropriating funds for research. “Once we screened before Congress I thought our work would be over, but it’s just the beginning. It’s a deeper work and a much larger project, said Rae.

As a result of Dandy Kids the first medical conference on Dandy Walker Syndrome will be held in Denver Colorado April 23, 24, 25, 2009. This conference is for families and members of the medical community.

Keynote Speakers will be Researchers, Dr. William Dobyns, and Dr. Kathleen Millen from the University of Chicago, Department of Human Genetics. Proceeds from the sales of DVD”S of Dandy Kids will help to fund the conference and ultimately research.

DVD’s of Dandy Kids can be purchased immediately at www.dandykidsdocumentary.com through Google Check out for $20.00 DVD’s will also be available on Amazon.com November 27th, 2008 for $20.00. Bulk pricing for medical facilities, and teaching Hospitals, and libraries are also available at www.dandykidsdocumentary.com through Google Check out.

To book a special screening of Dandy Kids and guest speaker Darla Rae, or to support the medical conference please contact us at darla@film-itproductions.com

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For Immediate Release                                                                                                          Contact: Darla Rae
August 16th, 2008                                                                                                                 (720) 620-0536

Dandy Kids Documentary Wins at Bayou City (Houston) Inspirational Film Festival with tears, courageous families, big emotions, and a message of Hope!

Houston TX- “Dandy Kids” opened the Bayou City Inspirational Film Festival over the weekend to many tears and emotions from audience members. “Dandy Kids” is about children with a rare brain malformation called “Dandy Walker Syndrome said Darla Rae, the films Executive Producer, and Director. Rae was on hand for the screening in Houston and is still amazed at how people receive the cinema verte style documentary, which she made to help raise awareness. It’s always interesting when people see it, and are overcome with emotions, Then you know your touching hearts. One can only hope that you touch them enough so that they tell others. We want everyone to know about this problem. These parents receive this diagnosis and they are made to think it’s a death sentence, mainly since the medical community is at a loss for words” said Rae. Rae’s great nephew has DWS and is an encouragement to others.

In April “Dandy Kids” screened before members of Congress in DC to gain additional support for H Con Res 163 which would ask the (NIH), National Institute of Health to appropriate funds for research on Dandy Walker Syndrome and Hydrocephalus. On June 26th H Con Res 163 went to the House floor for a vote with 105 bi-partisan co-sponsors and was unanimously passed. The efforts of this Resolution was that of one family and their perseverance after their son Ryan was born with DWS. Eric and Andrea Cole led the charge lobbying on the Hill, which is a lot for anyone to endure.

This H Con Res 163 does not lock in a specific amount of money for research; it only suggests that the research is warranted. “I receive numerous calls and emails weekly if not daily asking for help in understanding this diagnosis. I plan to make this documentary available to film festivals and all medical teaching facilities, and anyone who will give us a platform to speak in order to help these families. There are thousands around the world receiving this diagnosis and I want to do all that I can to help them know they are not alone, and that it doesn’t have to be a “Death Sentence” diagnosis. I want them to have as many facts as possible, but not to lose Hope in the process, said Rae.

Rae made the film with support of Congress, researchers, and families around the world that offered their own footage in order to bring their stories to fruition. “Dandy Kids” features interviews with Members of Congress Heather Wilson, and Chris Van Hollen. Top researchers Dr. Bill Dobyns, Kathy Millen from University of Chicago, Dept. of Human Genetics and Johns Hopkins world-renowned pediatric neurosurgeon Dr. Benjamin Carson also appear along with many families from around the globe.

“This is a message of HOPE!” said Rae.

For more information visit: www.dandykidsdocumentary.com

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Washington DC— “Dandy Kids” screened before members of Congress, Congressional staffers, Children’s Advocates, and medical professionals top in their field. “It was a little intimidating at first just walking up to the US Capitol and realizing the magnitude of what we were doing. Not knowing who would be in the audience, but at the same time understanding that they were taking notice of what we are fighting for”, said Rae.” Families who are in this battle with their loving children affected by Dandy Walker Syndrome traveled for hours just to be present and to show their support of “Dandy Kids Documentary” and H Con Res 163, which currently has 83 bipartisan Co sponsors. H Con Res is the result of Dandy Walker Alliance founder Eric Cole, and his diligent efforts to push for legislation. Eric and his wife Andrea attended the screening along with families from Maryland, Pennsylvania, North Carolina, Colorado, and Alabama. The evening was attended by many physicians, including Commander of the 79th Medical Group at Andrews AFB, Colonel Robert Miller. “This documentary was exceptional in educating people about Dandy Walker. As a Developmental Pediatrician, I cannot think of a better way to better appreciate the challenges families of children with rare diagnosis have to endure. If this documentary helps one child with a rare syndrome or diagnosis, then it was well worth the effort. I have no doubt that this will be the case for this syndrome thanks to “Dandy Kids”, said Colonel Miller.

Also on hand to perform her poignant song, “Songbird” which was written for “Dandy Kids” was none other than Nashville recording artist Laura Dodd, accompanied by Tom Walker on the guitar.

“Dandy Kids” is a documentary which features children with Dandy-Walker Syndrome (DWS) and their parents, doctors, nurses, researchers, and members of the US Congress who are advocating for both an increase in awareness and funding from the National Institute of Health. DWS is a brain defect that causes a multitude of other anomalies. Children with DWS can have hydrocephalus, spina bifida, deafness, and heart and kidney problems to name a few.

During the Q&A following the screening Rae and various medical professionals answered many questions in attendance. It was obvious by the questions that many are searching and seeking for answers. “They need help that we as filmmakers can’t give, but Congress can. That is why we already have signed up 25 families affected by DWS for our family conference, which will be held April 23, 24, 25th, 2009 in Denver Colorado”, said Rae. The conference is for families affected by DWS and medical professionals, and researchers working to make advances in medicine surrounding the diagnosis, both that can educate each other.

It is Rae’s desire to have the awareness of DWS elevated to an awareness level to that of Autism or juvenile diabetes. For additional information or to view the trailer please visit www.dandykidsdocumentary.com. For more information you may also visit www.dandy-walker.org.

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Here is a photo of Hunter on Alice 105.9 radio Morning show in Denver talking about how he doesn't feel that different from other kids with Dandy Walker Syndrome.  Alice 105.9 broadcast live from the new Children's Hospital raising money for Children's Hospital.

Details of DWS was discussed and Alice 105.9 has provided DandyKidsDocumentary.com with a link from their website.


"Darla Rae took a frightening family situation and turned it into a story of hope for families of children born with Dandy Walker Syndrome. With this movie, Darla has managed to unite families from all over the world and educate the general public about a condition that not much is known about. 'Dandy Kids' is both touching and informative, and the strength of the families involved is inspiring." 

Jennifer Wilde
Alice 105.9

Contributed by: Leslie Madsen on 1/18/2008

The nightmare pronouncement from a doctor's lips, "your child has a congenital brain malformation" are words that no parent ever wants to hear. And yet for every 1,000 babies born in the U.S., one set of unlucky parents is likely to have a brave new world of birth defects enter their universe and reshape their lives.

One of these malformations is Dandy-Walker Syndrome (DWM), the subject of a documentary currently in production that made its debut at the Starz Film Center in Denver on January 17th to a receptive audience of friends, family and philanthropists. DWM is a brain malformation that occurs during embryonic development of the cerebellum and 4th ventricle.

Darla Rae, the award winning filmmaker of 'The Goal' (2006), has again reached into her personal experience and compiled a story packed full of interviews, pictures (warning: bring a Kleenex for the brain shunt surgery sequence), information and people that grapples with the enormity of the great unknown.

Parents are the crux of Dandy Kids http://www.imdb.com/title/tt1129416/combined as often the news is delivered to them long before their baby is born. The first response is shock: one mother said she stopped listening after the doctor said, "your daughter has Dandy Walker Syndrome" as if her own brain shut down in order to process an unfathomable concept..

After the shock comes questions, hundreds of them, as scared and concerned parents want answers about how Dandy Walker will impact a child's physical and mental development. Dandy Kids provides a three-part response to this overwhelming feeling of powerlessness as headlined by Eric and Andrea Cole, a couple who founded the Dandy-Walker Alliance http://www.dandy-walker.org/  after fruitlessly seeking information about the syndrome in 2005 when their son Ryan was born.

Finding a physician that is compassionate, helpful and knowledgeable about this syndrome can also provide answers and direction. Child neurologist Dr. Julie Parsons of Children's Hospital in Denver is caring as well as clinical: medical assessments are critical to these children and their families, but predictions are in short supply as a range of outcomes are possible.

Which leads to the last and most endearing part of the documentary, one that I trust will be emphasized in the final cut: that of 'cope and hope'. Scenes of these 'dandy kids', talking to the camera and playing with their siblings, are truly amazing and awe-inspiring. Those of us that have raised children whose only problems were ear infections and acne are overwhelmed by the incredible amount of love and effort that their parents and families have exerted in order to get on with the routine of daily living.

If one of your resolutions for 2008 is to rethink what is important in your life, make a note to yourself to see Dandy Kids when it is released in the not-too-distant future.
 

Click here for printable version

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