Victoria ... the "Mermaid with Heart"

Besides traveling coast-to-coast, swimming the vast seas, dodging the tsunamis, catching a few waves, basking in the sun, frolicking with the dolphins, collecting pearls and shells, blowing bubbles, and waiting patiently for her handsome sailor or Merman to appear ... Victoria spends part of her time in the "Land of Enchantment" ... hence one of her nicknames, the "DESERT MERMAID"!

Although Victoria misses the dolphins, manatees, and other tropical aquatic mammals, she makes the most out of her arid desert environment. She has become friends with the lizards, roadrunners, and prairie dogs and often, swims in adobe territorial-styled pools. Instead of being surrounded by coral and seaweed, she is now protected by the cacti and sagebrush. Often when she gets homesick, she looks up into the clear blue, sunny skies which remind her of the clear blue, sparkling seas.

The "Land (or "Sea") of Enchantment" is also known for its performing, visual, and creative arts, something Victoria has always enjoyed. She has always been creative, artistic, and imaginative and loves to draw, paint, sculpt, design, and create. She also loves dance and all types of music -- from Classical to Indie to Reggae to Celtic to Pop to Rock. She would definitely be lost without her SeaPod! :)

In addition to her love for the arts, Victoria has always been community-minded, peace-loving, health-conscious, family-oriented, and environmentally aware -- a real asset to the land and sea!

She is close to her MerFamily, Starfish cousins, and Dolphin buddies. She gains her strength and inspiration from her family and the seas. Without them, she would not be the "Mermaid" she is today.

Unconditional love, patience, understanding, compassion, and the ability to see above any challenging situation has provided her with good, solid core values. She is blessed and thankful for her good tidings.

Victoria believes in helping others and in the creation and promotion of positive and healthy environments.

She is dedicated to helping others in need, especially those with rare, serious, and life-threatening medical disorders ... typically disorders that don't fit the "classic textbook case" ... or the "Zebras" of medicine!

Please subscribe to her blogs to find out more about MITOCHONDRIAL DISORDERS and how it's related to other diseases and disorders such as AUTISM, PARKINSON'S, ALZHEIMER'S, SIDS, RETT'S SYNDROME, etc.

Since Victoria advocates for the fish who lose their scales, the dolphins who can no longer make sounds, the clams who can't bake, the sea urchin who loses his urchins, the hammerhead shark that can't find a nail, the seahorse without a saddle, the snail with no shell, the clownfish that can't get a laugh, the pipefish who can't smoke, the grouper who prefers to be alone, the kelp who needs help, the sole without a soul, the smelt that can't smell, the swordfish who can't fence, the odd cod, and the school of fish without a teacher ... she is known as "VICTORIA ... the 'MERMAID with HEART'"!

Mitochondrial disorders are one of the 40+ neuromuscular diseases covered by the MDA. You may remember Mattie Stepanek, the former MDA Goodwill Ambassador. He died on June 22, 2004, at the age of 13, of a mitochondrial disease.

Mattie was a world-renowned author of five best-selling poetry books and was known for his frequent television appearances, including memorable visits to the Oprah Winfrey show, where he talked about his poetry, his disease, and his desire for world peace.

Victoria and at least two of her siblings have a mitochondrial disease ("Mitochondrial Encephalopathy with Complex I and Complex III Defects" and a probable variant of MELAS) -- one similar to Mattie and his family's. It's a rare disease with no cure.

Since most people have never heard of MITOCHONDRIAL DISEASE, Victoria hopes to shed a little light on it ... and create some "waves"! :) She's hoping with more awareness, it will generate more research which will eventually, lead to a cure!

A recent landmark research finding indicated that one in every 200 people has a DNA mutation that could potentially cause a mitochondrial disease in them or their offspring. Mitochondrial disease is a devastating and often fatal disease, and mitochondrial disorders are at the core of many well known diseases and chronic illnesses, such as Alzheimer's disease, Parkinson's disease, and autism spectrum disorders.

This ground breaking discovery confirms what researchers and experts have believed for some time -- MITOCHONDRIAL DISEASE IS NOT RARE. This discovery underscores the need for additional research funding to help better diagnose and treat affected individuals and to learn more about how mitochondrial dysfunction is connected to other diseases.

Mitochondrial diseases are extremely complicated and often go undiagnosed or misdiagnosed for years. They develop when the mitochondria -- the body's main energy source -- do not function properly.

Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. Because they are in almost all human cells, this "power failure" results in disease that can affect almost any body tissue. Therefore, the severity of symptoms and how the disease manifests itself can vary from person to person. One person may suffer difficulty breathing, have uncontrollable seizures and/or digestive problems, while another may not be able to walk, talk, see or hear.

Here are some videos showing the different aspects of mitochondrial disease and how it may affect a person or family ...

The first video shows the "invisible" disability side of it ... although some affected individuals may also have "visible" disabilities, too.

Please feel free to email with any questions, comments or suggestions. Thanks!

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