TAKOA

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TAKOA

Takoa Grace was born a healthy baby on February 3, 2010. At 5 weeks old “Koa” had her first grand mal seizure. Koa was later diagnosed with a condition called Infantile Spasms which is a catastrophic formof Epilepsy where babies seize essentially all day long.

At her worst, Koa was having 30-40 seizures a day, sometimes each one lasting 45 minutes. She has been hospitalized over 20 times and has been to the ER countless times because of her seizures. She has failed 8 pharmaceutical drugs, including 6 weeks of twice daily steroid injections.

At 6 months old, Koa had brain surgery. At 2 years, she needed to have a g tube put in because of the side effects of all of the medications. Now she is 100% dependent on the feeding tube. On April 15th, 2014 doctors placed a Vegas Nerve Stimulator in Koa’s chest in hopes of better managing her seizures.

She currently takes 2 anti-epileptic medications and 7 more medications to counteract the side effects of the anti-epileptic meds, plus she is on a restricted diet to help manage her seizures. One of her medications causes bone marrow damage and the other one causes drooling, insomnia, and aggression. Takoa’s most recent diagnosis is Lennox Gastaut Syndrome. LGS is a form of epilepsy which is difficult to treat and is accompanied by developmental delay and psychological and behavioral problems.

My child is 4 years old but developmentally is that of a 2 year old, all because of seizures which she still has every day. Doctors have done everything they can to help her. Our final hope is CBD.

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2 thoughts on “TAKOA

  1. I am Takoa’s paternal grandmother and only get to see her every 2 years. Shall try to cut it down to 1. Love this little girl to bits and cannot wait to see her in November again.

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