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This is a story and an effort spearheded by P.A.N.D.O.R.A with a Follow up to this letter.Send a Card to Ryan

Hi Everyone,
Here is a draft of a the letter pandora WOULD LIKe to send to Gov Perdue and cc other individuals like County officials and congressman.

I am sending to every organization listed and to individuals as well who may or may not be listed. Feel free to forward to others too. All I need is a confirmation e-mail that the organization and the individual is on board. I made the letter quite simple and to the point. But obviously since I am asking you to sign off your input is appreciated. In addition, if any of the organizations prefer to write on its own letterhead and with its own text.. Please do so and let me know too. The impact will be just as strong!

The Honorable Bev Perdue
Governor of North Carolina
20301 Mail Service Center
Raleigh, NC 27699-0301
Phone: (919)733-4240
Fax: (919)733-2120

Dear Governor Perdue:

We are writing to you in reference to the situation of the Baldwin family and more specifically of Ryan Michael Baldwin, a young child, from Black Mountain, Buncombe County, North Carolina.

Ryan is medically disabled and carries a diagnosis of CFS (2004), severe autonomic dysfunction (2005), a progressive heart conduction system block  (LBBB) with right axis deviation (2008), and Mitochondrial disease (2008).  He has been to Johns Hopkins
(2004), Mayo Clinic (2005), Cleveland Clinic (2006), and was on referral to UNC Chapel Hill for Mitochondrial disease (2008) when Buncombe County NC Department of social services interfered with all his medical care and upon an anonymous physician referral decided to remove Ryan from his home and place him in foster care.  Buncombe County DSS also seem to have removed his power wheelchair (which he used daily to conserve energy).

Despite these serous confirmed medical diagnostics and wonderful care from his parents Lisa and Rodney Baldwin, Buncombe County  Department of Social Services (DSS)  has charged his parents under the Fictitious Disorder by Proxyand has not allowed them visitations or any contact with their son.

Since this is a serious charge to be levied against any family or individual, and we are cognizant of the mission and great responsibility that the office of Ms. Amanda Stone has in order to ensure the safety of children in Buncombe County.  But, we are also cognizant of the serious fact that the Buncombe County DSS does not have access to the scientific body of medical knowledge that entails in the overall diagnosis of an individual suffering with chronic fatigue syndrome (CFS) also known as chronic fatigue immune-dysfunction syndrome, CFIDS and also known in Europe and other countries as myalgic encephalomyelitis or encephalopathy (ME) and there is no medical personnel or provider in Buncombe county who is an expert in the neuroendocrineimmune disorders field.

CFS or ME is a complex and potentially extremely disabling illness that only more recently has begun to receive more funding for research and attention towards medical care and potential treatments. The Center for Disease Control and Prevention (CDC) estimates that one million to 4 million American are stricken with this illness. The illness also has many sub-sets as it affects children, teenagers, young adults, adults and the elderly.

The basis of the charges brought against the Baldwin family doesnt stack up to the medical diagnosis and medical care that over the years, the family has diligently pursued for their son Ryan. The overzealous attempt from the Buncombe County DSS is being misdirected. Its resources should be used to ensure the family has the environment it needs to ensure medical access and home schooling is being provided to Ryan. Removing him from home and placing this child in foster care is not for the best interest of the child and his family.

 

 

Therefore we urge you :

  • To investigate and take action in this matter to ensure that the Baldwin family be reunited with his son Ryan as soon as possible.
  • To establish steps within your office and state by instituting a medical provider training through your State Department of Health so in the future parents with children with CFS/ME would not have to go through this hellish situation. An awareness to this illness as well as other Neuroendocrineimmune Disorders (NEIDs) like fibromyalgia (FM) Gulf War syndrome (GWS), multiple chemical sensitivities (MCS) or environmental illness (EI), and chronic Lyme disease (CLD) should be in place. We would be glad to provide you with researchers and physicians and other medical professionals who can train and teach in your state.
  • To ensure Ryans family has the county support it needs to care for their child and his future.

We are available to discuss this issue with anyone from your office. The undersigned below are the organizations, which respectfully urge you to take action in our request.

Follow up to this letter: Click Here.

Marly C. Silverman
Founder
P.A.N.D.O.R.A.- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.  
www.pandoranet.info

Sandi Lanford
President
The Lanford Foundation LifeLyme
http://www.lifelyme.org/

Kim McCleary
President & CEO
The CFIDS Association of America, Inc
www.cfids.org

Daniel Moricoli
Founder
CFSknowledgecenter.com 

Pat Fero
Executive Director
The Wisconsin CFS/ME Association
http://www.wicfs-me.org/

Cort Johnson
Phoenix Rising
Founder
http://phoenix-cfs.org/PhoenixRisingsubscribe.htm

Dr. Lucinda Bateman
Founder
The Organization for Fatigue and Fibromyalgia Education and Research- OFFER
http://www.offerutah.org/

Shari Ferbert
President
AFFTER Advocates for Fibromyalgia Funding, Treatment, Education and Research.
http://www.affter.org/

Yvonne Keeny
Founder & Executive Director
Fibromyalgia Coalition International
http://www.fibrocoalition.org/

 

Steve Dupre
President
NAME National Alliance for Myalgic Encephalomyelitis
http://www.name-us.org/

Rik Carlson
President
The Vermont CFIDS Association
www.vtcfids.org

Peggy Walk
President 
The New Jersey CFS Association 
http://njcfsa.org/

Sharon Ostalecki
President & Founder
H.O.P.E. Helping Our Pain and Exhaustion, Inc.
http://www.hffcf.org/

 

Michael Munoz
President
The Rock Mountain CFIDS/FMS Association
http://www.rmcfa.org/index.html

 

INDIVIDUALS

 

Kenneth Friedman, Ph.D, Associate Professor, University of New Jersey Medical School.

 

Herbert Hyman, MD
CFS Specialist & Family Physician, West Palm Beach, Florida

 

Leonard Jason, Ph.D
CFS/ME Researcher
DePaul University, Chicago Illinois

 

Nancy Klimas, MD
CFS/ME Researcher, University of Miami, Miami, Florida


In Good Health and In Beauty,

Marly (Marla) Silverman
Founder
P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
255 Alhambra Circle, Suite 715, Coral Gables, Florida 33134 - Volunteer Help Line: 954-783-6771
www.pandoranet.info
Built on Hope - Strong on Advocacy - Finding a Cure through Research.

P.A.N.D.O.R.A. is the official charity of the Florida Health Expo