^i^ SILENT ANGEL'S ^i^
THERE ARE LINKS TO OTHER PAGES IN THIS SITE,
THEIR LOCATED TOWARDS THE BOTTOM OF THIS PAGE,
THEY ARE HIGHLIGHTED.
Every Heart that is Comforted in the Midst of Distress,
and Every Person Who Experiences GODís Love in Action
is Worth Every Sacrifice We Make.
THIS PAGE IS DEDICATED TO
OUR LITTLE ANGEL ANNA BREEZE
AND TO ALL SILENT ANGEL'S OF THIS WORLD
I PRAY EVERY DAY! THAT GOD! BE EVER SO VIGILANT,
THAT THEY ALL RECIEVE AN ABUNDANCE OF LOVING CARE,
FOR WHAT I HAVE SEEN
ALL THE GIRLS ARE TRULEY! "SILENT ANGELS"
PSALM 72:12 AMEN!
I COME FROM A VERY TIGHT KNITT FAMILY, WE ALL ARE VERY FAMILY ORIENTATED, AND WE STICK TOGEATHER NO MATTER WHAT IT TAKES,
WE KNOW THATS HOW GOD HAD PLANNED IT, OUR FAMILY HAS BEEN BLESSED AND COMMISSIONED, WITH THE RESPONSIBILITY OF TAKING CARE OF AN ANGEL RIGHT HERE ON EARTH!
Our Journey is Rett Syndrome
There is no sugar-coating its hardships. The fact is that the physical sufferings and the emotional tensions are both embodied expressions and ferocious forces of Rett Syndrome.
Yet in the face of these Great Challenges, We find amazing ways to Endure. It is indeed Our Shared Destiny.
Our Journeys Guide, Our Beloved Angel Anna with Her Infectious Smile and Her Courageous Spirit,
Contentedly leads Our Way. Our Journeys Path, Once Shadowed by the Shock of the Dreadful Diagnosis,
is Now Crystal-Clear. It is to Endure with Faith. It is to Provide with Love. It is to Celebrate the Amazing Spirit that is Her. We Thank and Praise GOD that He Blessed Us and Trust Us to Care for Her, Our Journey is an Extraordinary One.
All The GLORY TO MY LORD! I THANK YOU JESUS!
OUR LITTLE ANGEL'S NAME IS ANNA, AND SHE HAS RETT SYNDROME, GIRLS WITH RETT'S ARE CALLED SILENT ANGELS,
THERE'S NOT EVEN A LOT OF DOCTOR'S THAT ARE FAMILIAR! WITH RETT SYNDROME,
THE NEXT TIME YOU TALK TO A DOCTOR, JUST ASK, IT IS ACTUALLY SHOCKING!!!
I WILL UPDATE THIS PAGE WHENEVER I CAN
LOVE & LIGHT.... RAM ^i^ "GOD IS OUR REFUGE & STRENGTH" ^i^ UP-DATE:02/24/2009, THE ABOVE STATEMENT HAS CHANGED MUCH SINCE THAN,
MORE NOW KNOW AND MUCH RESEARCH HAS EXCELLED!
HERE ARE SOME OF THE IMPROVEMENTS!
InterRett is the First-Ever Project Collecting Data on a Worldwide basis about Rett Syndrome.
For many families, Rett Syndrome is our first exposure to the system of medical care. It can seem large and complicated, especially at the time of diagnosis or if unexpected medical issues emerge. We must take an active role in coordinating medical care within a system that may be unfamiliar or feel overwhelming. Fortunately there are practical steps families can take to navigate the world of medical management more comfortably. One important step in managing medical services is to keep records organized and accessible. While your childs doctors will have files about her care, you will also need copies for a variety of reasons. One Resource you might consider is a CARE Notebook that can be Downloaded FREE of Charge at http://cshcn.org This notebook explains what records are important to keep and provides a place and structure for filing your information.
http://www.fathersnetwork.org/ -- a network of support groups for fathers http://www.familyvillage.wisc.edu/index.htmlx -- a general online disabilities support with links to listserves http://www.disabilityresources.org/index.html -- Disability Resources, a nonprofit established to promote and improve awareness, availability and accessibility of information that can help people with disabilities http://www.eparent.com/ -- Exceptional Parent
RETT SYNDROME ASSN OF ILLINOIS
Information+Research+Support+Awareness = IRSA
A SHORT FILM ABOUT RETT SYNDROME
AND THE CIRCLE OF ANGELS RESEARCH FUND
INTRODUCED BY JULIA ROBERTS
Published Online February 8, 2007
Science DOI: 10.1126/science.1138389
Submitted on December 4, 2006
Accepted on January 18, 2007
Reversal of Neurological Defects in a Mouse Model of Rett Syndrome ............................
Neuroscience and Biomedical Systems, Institute of Biomedical and Life Sciences, West Medical Building, University of Glasgow, Glasgow G12 8QQ, UKRett syndrome is an autism spectrum disorder caused by mosaic expression of mutant copies of the X-linked MECP2 gene in neurons. Neuronal death is absent, suggesting that this is not a neurodegenerative disorder. An important question for future therapeutic approaches to this and related disorders concerns phenotypic reversibility. Can viable but defective neurons be repaired, or is the damage done during development without normal MeCP2 irrevocable? Using a mouse model, we demonstrate robust phenotypic reversal, as activation of MeCP2 expression leads to striking loss of advanced neurological symptoms in both immature and mature adult animals. Reversal of Neurological Defects in a Mouse Model of Rett Syndrome
Jacky Guy, Jian Gan, Jim Selfridge, Stuart Cobb, Adrian Bird
Supporting Online Material
This supplement contains:
Materials and Methods
Figs. S1 to S7
Movies S1 to S3
The movie shows a Mecp2lox-Stop/y,cre-ER mouse (#286, see Figure 2D) with neurological symptoms at 12 weeks of age. Note low stance, inertia, tremor, arrhythmic breathing, splayed hind limb position, and moderate hindlimb clasping. TM injection was initiated on this day.
The same mouse as shown in Movie S1 four weeks later after a course of five weekly TM injections. Female mice that received identical TM administration regimes 26 weeks prior to filming. The first mouse seen is a Stop/+,cre female that displayed symptoms at the beginning of TM treatment and is now indistinguishable from wild-type using our symptom scoring system (see Materials and Methods). The second mouse entering the frame is a wild-type female. The third mouse to appear is a Stop/+ female lacking the cre-ER transgene, which therefore fails to respond to TM. Note inertia and obesity of this third mouse. GO TO www.science.com
Science DOI: 10.1126/science.1138389
PLEASE! EVERYONE NEEDS TO HAVE A LOOK AT THIS VIDEO!
YES! EVERYONE NEEDS TO SEE THIS!
The Untold Story of Terri Schiavo
Ten Commandments for Parents of Handicapped Children
This was circulated to the CSHCN national listserv by Kristina Moreland who offered to share it, I Also Would Like to Share This. ^i^
Take one day at a time, and take that day positively. You don't have control over the future, over today, or over any other day, and neither does anyone else. Other people just think they do.
Never underestimate your child's potential. Allow him/her, encourage him/her, expect them to develop to the best of their abilities.
Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he/she gets more of your time.Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
I have never heard of Rett syndrome. Why?
Most people have never heard of Rett syndrome because it has only recently been formally recognized. In fact, it wasn't until 1983 that the condition known as Rett syndrome first appeared in medical literature. Those with Rett syndrome were likely once misdiagnosed with autism or cerebral palsy.
What causes Rett syndrome?
Rett syndrome is a condition caused by a gene mutation (MECP2) that occurs before birth. The discovery of the Rett syndrome gene was announced on October 1, 1999 by researchers at Baylor College of Medicine in Houston, Texas.
Why is it called Rett syndrome?
Rett syndrome is named for Dr. Andreas Rett, of Vienna, Austria, who first recognized the disorder at his clinic in 1965. A "syndrome" is the term for a group of symptoms that identify a special condition.
Why is Rett syndrome seen mainly in females?
Females have two X chromosomes (XX) and males have one X chromosome and one Y chromosome (XY). The mutation which causes Rett syndrome (MECP2) is on the X chromosome. So, if the mutation causing Rett syndrome appears on one X, females are able to survive because they still have another X. Males, on the other hand, have only one X (XY). If the mutation appears on a male's X chromosome, he would most likely not survive to birth.
This has led researchers to speculate that a male fetus that survives to birth with the MECP2 mutation would have far more severe symptoms than a female fetus--to the point that the condition would probably not even be recognized as Rett syndrome.
How many people have Rett syndrome?
Before the gene discovery, Rett syndrome was found to occur about once in 15,000 female births. New findings suggest that milder forms of Rett syndrome may exist in much higher numbers. There may be hundreds of thousands of girls and women with Rett syndrome throughout the world who are misdiagnosed or unidentified.
When is Rett syndrome first noticed?
The genetic mutation is there before birth, but it takes some time for enough problems to develop to be able to notice that something is wrong. A girl with Rett syndrome is usually born healthy and exhibits normal or near-normal development until 6-18 months of life.
What are the symptoms of Rett syndrome?
Again, Rett syndrome almost always affects girls as opposed to boys. At some point in the years following the first 6-18 months of life, the child experiences an overall regression. Below are the criteria for the diagnosis of Rett syndrome that must be present in combination with a positive test result for the MECP2 gene:
Other symptoms may include:
Does Rett syndrome occur more than once in a family?
99.5% of the time, Rett syndrome occurs only once in a family. The spontaneous mutation that causes Rett syndrome happens after conception (not inherited from the parents). In a very small number of cases, less than .5%, the Rett syndrome gene is inherited, passing from one generation to the next or occurring more than once in a family.
What is the most difficult challenge for someone with Rett syndrome?
The individual with Rett syndrome has a number of problems that affect her in different ways. The biggest problem is apraxia, or the inability to program (usually automatic) the planning done by the brain to execute movements. Apraxia affects all aspects of motor functioning: the ability to walk, move, talk, etc.
What kind of therapies are used as treatment?
How can I help?
In everyday interactions, patience is key. Individuals with Rett syndrome need extra time to respond--it may take several minutes before a girl can give an answer or make a movement to show understanding.
Is there a treatment for Rett syndrome?
Right now, the treatments available for Rett syndrome are to improve symptoms, such as medications to control seizures or to help motor coordination or breathing. However, scientific studies of medications based on the gene mutation are now underway, and the future holds promise that more effective treatments can be found.
Another Way You Can Help!
Donate To The Rett Syndrome Assocation, That Will Help Supply Funds For More Research And Hopefully A Cure!
Every girl with Rett syndrome is different; you know this from experience. This means, though, that a doctor cannot predict with certainty what will happen to a particular young lady. The best we can do is to give some patterns and examples and maybe give an approximate guess as to what might happen in the future.
Girls with Rett Syndrome; understand and absorb much more in the way of information, impressions and contact than they are ever able to show. Their emotional abilities are a great asset, while their abstract thinking ability ceases at an early level of development. These girls have radically extended time lags with regard to taking in and transforming received information into personal, active reactions. Even family members and staff who know them well have to have plenty of time to wait for and interpret their eventual reactions, the indications that the girls have understood the message and wish to respond. Girls with Rett Syndrome sometimes develop a special ability to communicate via direct eye contact if their own face is close to that of another person, and it is essential for others to know about this possibility and learn to read the messages communicated this way. There does not seem to be any gradual decline in the girls' vision or their abilities to move their eyes. It is often impossible to test their hearing using conventional means. Their fine motor skills are their weakest skill, and most girls with the classical form of the syndrome have little if any ability to use their hands purposefully (apraxia). Most of them are also severely mentally deficient, although there are girls who retain some fragmentary mental functions.
It is important to consider the entire family's need for psychological and social support and a well-functioning system for relief and assistance. Girls with Rett Syndrome often have poor sense of day and night, which places the entire family under a great strain. Relief may be provided in the form of a "contact family" or short-term alternative accommodation so the girl's parents have some time to rest and recuperate. Siblings may react with grief and confusion when they see their sister's problems, and like the family as a whole, the siblings require open information about the syndrome, adapted to their own ages and needs. They may also need to speak to someone outside the family about their thoughts and questions, such as a( psychologist or a guidance counsellor ) I Personally would Disagree, I Recommend Your Minister, Pastor, Priest, and Other Family Members on both sides of the Family, and To Read Your Bible, Trust in GOD, Pray! Because the Psychologist and the Counsellor will have an Opnion, and maybe some ideas, But I cannot see where they would have the Love so I'd say Really Pray on how You handel Your situation.
Well since you have gone this far on My Ministry site, You can see the rest of it if You would like, there are many Awesome Pages left for You to View, so Enjoy! and GOD Bless You!
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