Mitochondrial Disease



Life for Victoria started off like any perfect baby girl – Blonde & blue eyed, coming in at a healthy 6lbs; she was perfect.

But soon, she began making quick jerking movements, something wasn’t right and like any loving parent would, I rushed her to the ER, not once but several times. Only to be told it was probably heartburn or reflux.

Then on 12/26/01, Victoria had a full blown seizure. She was taken to the Children’s Healthcare of Atlanta only to be sent home and told to follow up with a Neurologist. Then on 1/2/02, our fears were confirmed when the Doctor delivered the news that felt like a punch in the gut “Your daughter has grossly abnormal brain activity” The Doctor further explained that Victoria has infantile spasms.

As the years have gone by, we have tried every option the Doctors have thrown our way. We have traveled to Detroit via Angel Flight and visited a well know Neurologist in San Diego, Victoria had a Vagal Nerve Simulator placed in her chest and almost died when she tried the Ketogenic diet.

After coming to the conclusion, she will ALWAYS have seizures, we decided to get Choco, her seizure alert dog.

At age 4, Victoria was diagnosed with Mitochondrial Disease and we were told not to worry about her quantity of life but we should be more concerned with the quality of life. They said she would not live a long life, so instead of paying for dance lessons for my little girl, I pay for burial insurance.

Victoria is now 12 years old and continues to have seizures, daily. Our hope is that she can get the cannabis oil, here in our home State and begin to have a much better quality of life.

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