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A very serious topic, Munchausen by proxy and/or medical abuse, which I touched upon in my interview with WMHT, is currently being addressed by Mito Action.
I received a newsletter from Cristy Balcells the exec. director of Mito Action today, 7/17/13. If anyone has gone through / is going through this traumatic nightmare please contact Cristy directly at firstname.lastname@example.org
THANK YOU, MITOACTION!!!
Latest from the BLAZE on Justina Pelletier
YOU MUST WATCH and help spread the word!
By Cristy Balcells |
January 07, 2014
A family walks into the world-renowned Boston Children’s Hospital,
hoping to find a successful course of treatment for their acutely ill
child. Thousands of families carry the same hopes through those same
doors every day. But, this time, the family, which drove more than 100
miles to see a specialist about their 15-year-old’s chronic digestive
troubles, was stonewalled and ultimately accused of abuse.
Although the teen was being treated by a respected doctor at a Boston
teaching hospital and her sister struggles with the same genetic
problem, the parents were charged with medical child abuse for
over-medicating and over-treating the girl’s symptoms. Stripped of
custody, the Massachusetts Department of Children and Families admitted
the severely ill child to the hospital’s psychiatric ward for 10 months.
Since then, her health has only worsened, and her visits with family
have been controlled and limited by the state.
This nightmare is the real-life experience of the Pelletiers of
Hartford, Conn., whose 15-year old daughter, Justina, was diagnosed by a
leading expert with mitochondrial disease. On Jan. 10, the fate of her
custody will be decided in a Boston juvenile court.
Unfortunately, this case is not uncommon; rather news of such
conflict between parents and major medical institutions go mostly
untold. MitoAction, a nonprofit working to improve the lives of
mitochondrial disease patients and families through education, support,
and advocacy, receives several phone calls a month from desperate
parents across the country who say they are being investigated for, or
charged with, medical child abuse.
What is it about mitochondrial disease, or “mito,”
that is having this effect? Chronic complex diseases continue to baffle
the medical community despite an increase in diagnoses of rare disorders
such as mito, autism, PANDAS, and others. It’s easy to blame the
patient or family when traditional approaches fail. An ongoing national
survey of thousands of mito families proves that this is not a singular
problem. Over 100 parents report having been accused of making up their
child’s symptoms, seeking unnecessary treatment, or abusing their
children by “over-medicalizing” their condition.
Understanding the waywardness of mitochondrial disease is key. It is
an invisible invader. Symptoms include: poor growth, loss of muscle
coordination, muscle weakness and pain, seizures, vision and hearing
loss, gastrointestinal issues, learning disabilities, and heart, liver,
and kidney failure. One day symptoms can be mild with patients seeming
“normal.” The next day they may be severe, incapacitating the patient.
The cellular misfiring undermines one system and then another. The
erratic appearance of symptoms leads some medical professionals to
assume the parents instigate their child’s ill health. Moreover,
diagnosis is difficult, expensive and requires the finesse of an expert
geneticist or metabolic specialist. In Justina’s case, Children’s
doctors questioned her diagnosis, her symptoms, and her psychological
well-being. What was a medical condition then mushroomed into a legal
At MitoAction, we believe education will bridge the gap between
patients and the institutions and agencies that serve them. MitoAction
has developed a task force of medical and legal professionals committed
to learning more about the disease and preparing themselves to treat and
advocate for patients.
Doctors and nurses from around the country will attend MitoAction’s
conference on Feb. 8 in Los Angeles to deepen their understanding of the
disease. Internationally, physicians and researchers agree that 1:2000
people will develop mitochondrial disease. While today there is no cure,
there is a growing body of research supporting clinical trials and
drugs to treat the disease. Support and education are critical at this
stage. Having more mito-informed medical staff in the community will be a
We foresee a day when these mito-educated case managers will work as
liaisons between family and doctor to document and assist in the child’s
care so parents are not left managing many aspects without assistance.
As a society, we cannot be short-sighted about the small cost of such
moderate interventions given the horrifying cost to a child caught in
the midst of such a nightmare.
Cristy Balcells is executive director of MitoAction — Mitochondrial
Disease Action Committee — of Boston and author of “Living Well with
Mitochondrial Disease.” She is also a nurse and parent of a daughter
with the disease.
You can find more articles on this subject by visiting our NEWS page.
WE LOVE YOU, CHERYL CLOW RN!!!!
Albany Medical Center’s Employee of the Year for 2013!
It is with great pleasure that I am able to share a
piece of news with you today regarding Cheryl Clow, RN in Genetics.
Cheryl Clow was recognized today by James Barba , CEO of Albany Medical
Albany Medical Center’s Employee of the Year for 2013!
To receive Employee of the Year is a tremendous
commendation which recognizes the gifts that Cheryl brings to the
department as an employee and individual on a daily basis. Cheryl was
not only nominated for this award by her colleagues
but by patients and families that she has worked with over the years
that she has been at Albany Medical Center.
Cheryl’s commitment to patient and customer service
and ability to provide care in a manner that embodies the spirit of
Albany Medical Center were outlined in the letters that the committee
received. She was chosen from a pool of candidates
that included the hospital, the college, and the center. The many
strengths that Cheryl brings to her exchanges with patients and
unwavering commitment to best care sealed the nomination .
THANK YOU, TO ALL THE HEALTHCARE AND SUPPORT SERVICES PROVIDERS WHO ATTENDED OUR
2ND ANNUAL MITOCHONDRIAL DISEASE SYMPOSIUM NOVEMBER 13, 2013!
A recap and photos can be found on our EVENTS page.
MITO HOPE and HELP would also like to acknowledge and thank the following supporters for making our symposium possible:
Solace Nutrition, Empire Home Infusion Services, Nutricia NA, Vitaflo USA, The National PKU Alliance,
The Lake George Rotary Foundation,
The Thomas Patrick Morrison Foundation,
Double H Ranch, and St. Cecilia's Catholic Community of Warrensburg
MITO HOPE and HELP is a non profit 501(c) 3 program, sponsored by NYSARC Inc., Warren Washington and Albany Counties Chapter, www.wwaarc.org
As a unified MITO community, we are dedicated to raising much needed awareness of Mitochondrial diseases.
We continually strive to represent, unite and offer support to hundreds of individuals and their families living with, and /or who have lost loved ones to, mitochondrial diseases throughout Northeastern NY. Most importantly, MITO HOPE and HELP
wants our local MITO community to know that they are not alone! We
care, understand and acknowledge what EVERYONE is dealing with!
MITO HOPE and HELP is also committed to funding local appropriate medical care and support services for MITO patients of all ages! Individuals living with Mitochondrial diseases require specialized, coordinated care administered by trained professionals. The medical community acknowledges the lack of appropriate medical care and services for these poorly understood, complex, chronic and incurable diseases. This void can be significantly filled by funding a nurse practitioner to work under the direction of Dr. Darius Adams, geneticist at Albany Medical Center.
Mito Hope and Help has established an endowment fund with Albany Medical Center specifically for this purpose. Your donations are greatly appreciated! We must raise $306,000.00 to reach our goal which includes 3 years salary, benefits and vehicle expenses to fund the position.
In addition, MITO HOPE and HELP networks with
organizations, institutions and support resources to disseminate
pertinent information to individuals and their families living with Mitochondrial diseases throughout our Northeastern NY communities.
any of you would like for MITO HOPE and HELP to speak at your church /
house of worship or for any other group please contact me at,
We can all make a difference!
This website is dedicated to everyone suffering with a Mitochondrial disease and their families, as well as those who have lost their lives to these devastating diseases.
HERE'S A WAY YOU CAN SUPPORT MITO HOPE AND HELP WHICH IS TOTALLY FREE AND EASY!
MITO HOPE and HELP has partnered with TD Bank through their Affinity Membership Program. Yearly TD Bank will issue MITO HOPE and HELP a donation based upon the supporters' balances in their TD Bank accounts.
If you're a TD Bank customer please take a few minutes and either call or visit your local TD Bank branch. Simply say, "I'd like to support MITO HOPE and HELP through TD Bank's Affinity Membership Program". Its that easy! There's NO paperwork involved, NO hassles, NO gimmicks, guaranteed! This is so easy and there is no cost, so why not?
Nothing is deducted from the supporters' account and its totally confidential between the supporter and TD Bank. Simply this is the universal means by which TD Bank has chosen to give back to the communities it serves. The easiest way is to call Marcella Towers, VP of the Warrensburg branch, at 518-623-2991.
If you're not already a customer, please consider becoming a TD Bank customer so you too can help support Mito Hope and Help!
Please ask family, friends and co-workers to help support MITO HOPE and HELP as well. TD Bank customers in other states can be enlisted also.
MITO HOPE and HELP was able to obtain the minimum 50 supporters needed, to qualify for this wonderful opportunity and a minimum yearly donation from TD Bank! However, the yearly donation amount is limitless! So please, help us continue this ongoing effort to support MITO HOPE and HELP!!!
VP. Store Manager Warrensburg,
TD Bank, America's Most Convenient Bank,
3852 Main Street,
Telephone - 518-623-2991
We hope to see you again! Check back later for new
updates to our website. There's much more to come!
Mito Hope and Help has a facebook page!