Mother of All Lies – Casey Anthony. RIP Caylee. We won’t forget you, Little Sweetheart.

Note: I normally don’t post anything on Addi and Cassi’s website that is not about their disease or something that is medical related. Hugh would say to leave it to Facebook or Tweet about it.

But the case with Casey Anthony and her little daughter Caylee has captured my attention….and my heart.

When you’re in so much pain about losing your own kids to a terrible disease, you can’t imagine a mother suffocating an innocent child and discarding her in a swamp to be eaten by animals.

Peter Gelzinis of the Boston Herald said it all for me!  His commentary is below.

Jury swayed by
mother of all lies

The O.J. Simpson case introduced us to the idea of jury nullification, but it took a 25-year-old bar-hopping party girl, bored by motherhood, to refine the concept.

Yesterday, a Florida jury acquitted Casey Anthony on all three counts of murdering her 2-year-old daughter, Caylee.

Then, this very same jury went on to return four guilty counts of lying to police about . . . that’s right, the murder of her daughter.

Shame on this jury for denying the obvious.

If the O.J. debacle proved anything, it was that the chances of killing your wife and beating the rap are better in California.

Likewise, what we take away from this sad, slimy soap opera in the Sunshine State is that a bimbo looking to detach herself from the burdens of her 2-year-old daughter has a good chance of getting away with murder in Florida.

All you needed to know about the absurdity of yesterday’s verdict was uttered by Casey’s victorious defense lawyer, Jose Baez, who reminded the public that he had never denied his client was a liar.

Quite a victory declaration.

Ah, but then what else could this lawyer say? Even though Casey Anthony was the last person to see her daughter alive, she spent a month denying Caylee’s disappearance to everyone, including her own parents.

Even when the trunk of her car reeked with the stench of death left by a decomposing body, Casey kept lying. She couldn’t even bring herself to conduct a sincere vigil. While the cops searched by day, Casey was hitting the bar scene at night.

But as this trial unfolded, it was clear that such damning “circumstantial evidence” was dwarfed by the suntanned dysfunction of a family who were all more than somewhat wacky.

O.J. was helped tremendously by the behavior of a white LAPD detective branded a racist.

To plug the huge holes in Casey Anthony’s story, she and her lawyers put her father on trial. All of this woman’s malignant deficiencies and narcissism could be explained by the alleged molestation she suffered at the hands of her father, a former homicide detective.

Casey’s lawyers tried to pin Caylee’s death on Dad, suggesting he was the one who put the duct tape over her mouth after she drowned in the family’s pool.

Apparently, that seemed to qualify as reasonable doubt in this jury’s collective consciousness.

And yet they weren’t troubled by a young mother who gets the two-word credo “belle vita,” or beautiful life, tattooed on her body while her dead child is rotting away in the woods.

From Hospital To Home on Christmas

We started Christmas Eve day in the San Francisco Bay Area at Children’s Hospital Oakland where Dr. Caroline Hastings gave Addi and Cassi their sixth injections of cyclodextrin into their central nervous systems.

By 1 pm, Addi and Cassi were feeling a lot better and we raced home on Highway 80 up over Donner Summit, arriving home just in time for Santa’s visit at 7pm.

Here are some of our pictures from Christmas 2010.  We are so blessed to have our little angels in our life.

We hope you all have a very nice Christmas and Happy New Year.

The Hempel Family

FDA Approves Request For New Cyclodextrin Treatment For Niemann Pick Type C

FDA Approval Received!

Children’s Hospital Oakland Receives FDA Clearance to Begin World’s First Cyclodextrin Administration Into the Brains of Twins with Rare and Deadly Cholesterol Disease

Sugar Molecule Used In Common Food and Household Products Like Febreze® Fabric Refresher Called Hydroxypropyl Beta Cyclodextrin (HPßCD) Will be Delivered into Twins’ Central Nervous System in an Attempt to Stop Neurological Progression of Niemann Pick Type C Disease

September 23, 2010 – Oakland, Calif. – Children’s Hospital & Research Center Oakland announced today that the US Food and Drug Administration (FDA) has granted clearance of an Investigational New Drug (IND) application to introduce Trappsol® Cyclo™ (Hydroxypropyl Beta Cyclodextrin or HPßCD) into the brains of six year old identical twin girls dying of a rare brain-destroying cholesterol disease called Niemann Pick Type C (NPC). Known as “childhood Alzheimer’s,” NPC is a deadly progressive neurological condition that causes severe dementia and other debilitating symptoms in children. The FDAs approved use of Trappsol® Cyclo™ marks the first time in medical history that HPßCD will be delivered directly into the brain of a human being in an attempt to arrest a progressive and fatal neurological condition.

Within days, Addison and Cassidy Hempel will travel from their home in Reno, Nev., to Children’s Hospital Oakland to start ongoing injections of Hydroxypropyl Beta Cyclodextrin (HPßCD) into their central nervous systems. Initially, the twins will receive six cyclodextrin treatments of Trappsol® Cyclo™ via lumbar injection over a 12-week period. If Trappsol® Cyclo™ is well tolerated and no adverse side effects occur, the twins are then expected to undergo brain surgery to implant access ports allowing HPßCD to be delivered into the brain’s ventricle system.

HPßCD is a ring of seven sugar molecules known as a cyclic oligosaccharide that is derived from starch. Derivatized cyclodextrins are used extensively in research labs to remove cholesterol from cultured cells and are well known in the pharmaceutical industry for their ability to solubilize drugs. Underivatized cyclodextrins are used throughout the food industry to make cholesterol-free products, such as fat-free butter, eggs and milk products. HPßCD is recognized as a GRAS (Generally Recognized As Safe) material for use in food products in Asian and European countries and is being considered for similar certification in the United States. Hydroxypropyl Beta Cyclodextrin, the chemical compound that will be administered into the twins’ central nervous system, is also an active ingredient found in Procter & Gamble’s Febreze® Fabric Refresher and is used to help eliminate odors from fabrics. Millions of people worldwide are exposed to small amounts of cyclodextrin compounds every day in food, cosmetics and household products.

“It is remarkable to be in position to try a genuine medical intervention that may retard or restore neurological function in children suffering from Niemann Pick Type C disease,” said Caroline Hastings, MD, the Children’s Hospital Oakland pediatric hematologist/oncologist who diagnosed the twins. Dr. Hastings also manages the satellite hematology/oncology clinic at Renown Regional Medical Center in Reno where the girls receive much of their treatment. “This family’s tremendous courage to move forward with this groundbreaking treatment to deliver cyclodextrin into the brains of their twins provides real hope for all children afflicted by this mind-robbing condition and possibly others suffering from cholesterol and lipid related disorders.”

In April 2009, the FDA approved an Investigational New Drug protocol that allowed Addison and Cassidy Hempel to undergo weekly intravenous infusions of Hydroxypropyl Beta Cyclodextrin into their bloodstreams through a Medi-Port catheter implanted in their chest walls. However, research conducted by David Begley, PhD, a leading blood-brain barrier expert at Kings College London, discovered that Hydroxypropyl Beta Cyclodextrin does not cross from the bloodstream into the brain. While the Hempel twins have shown improvements with ataxia and have less difficulty swallowing following intravenous intervention with HPßCD, they continue to decline neurologically and there are no other treatment options available to save their lives. The twins have lost most of their ability to speak and are experiencing intermittent seizures and dementia; however, the girls can still walk, see, and communicate to their parents with a range of sounds and gestures.

On June 13, 2010, Dr. Hastings filed a revised protocol to the Hempel twins’ Investigational New Drug applications with the FDA requesting permission to deliver Trappsol® Cyclo™ directly into the central nervous system of the twins in order to bypass the blood-brain barrier. Researchers studying Niemann Pick Type C afflicted cats and mice have discovered that when HPßCD is delivered directly into the brains of these animals, HPßCD has a remarkable life extending effect and appears to arrest the progression of this deadly neurological condition. It is currently unknown exactly how HPßCD is working to achieve these astonishing neurological effects in NPC animals or if it will have the same effect in humans.

For Chris Hempel, mother of the twins, the start of cyclodextrin treatments into the central nervous system of her twins “creates new hope that was unimaginable even a few years ago for an ultra rare disease with a certain death sentence.” Since receiving the NPC diagnosis in October 2007, Ms. Hempel has worked tirelessly with doctors and researchers around the world to search for a lifesaving treatment for her twin daughters. In May 2010, she worked with Dr. Hastings to receive one of the few orphan drug designations granted by the FDA for the compound Trappsol® Cyclo™.

“It’s extraordinary to think that a sugar compound used in common products found in my refrigerator and laundry room could have such a profound effect on human cholesterol metabolism and may actually save our daughters lives,” said Hempel. “We are incredibly grateful for the support we have received from the medical, regulatory, pharmaceutical, and academic communities who have worked to help us bridge the scientific gap and turn a treatment idea into a treatment reality.”

Approximately 500 children worldwide have been diagnosed with double genetic mutations on the Niemann Pick Type C cholesterol gene, yet what scientists learn about these children may have implications that reach far beyond this ultra rare genetic cholesterol disease. Recent published research reports of the role for the NPC1 gene in Alzheimer’s disease and human immunodeficiency virus infection (HIV) make Niemann Pick Type C disease and gene research relevant to millions of people worldwide.