Epilepsy Association of Utah

Batten’s Disease

Seize: The Story – Charlee Nelson

Seize: The Story – Charlee Nelson

What an amazing year the Epilepsy Association of Utah has had! With Paint the State Purple 2014, we are relaunching our Seize: the Story series.

We have decided that it was only appropriate to start with a somber story; a story of one of our heroes, Charlee.

Charlee was born January 30, 2008 to Jeff and Catrina Nelson. She was a happy, fun loving, funny, sweet and smart 3 1/2 year old girl. She enjoyed singing, dancing, playing with her brother and sister and loved anyone to read her a hundred books a day. Little did they know the greatest trial of their lives would start on May 20, 2011, when she had her first seizure.

Following that, she had hundreds of tests including: EEG, 2 CT Scans, 3 MRI’s, Spinal tap, skin biopsy, ERG and countless blood tests to find her diagnosis. She had to endure so much pain and suffering but amazed everyone with her strength.

After 21 months of testing and searching for answers, the diagnosis came. Although it is NOT the results they had hoped for, we knew she had a greater mission on the other side. She had a genetic disease called Batten disease. It occurs when a child inherits two copies of the defective gene, one from each parent. Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually children with this disease become blind and bed ridden. They will be unable to walk and talk and the disease is always fatal. Charlee’s type of NCL is Late INfantile NCL/CLN2; it begins between the ages of 2 & 4. This form progresses rapidly and ends in death between 8 and 12.

Charlee had the opportunity to meet many members of the Utah state legislature and be one of the faces for cannabis oil legislation in Utah. On March 14, 2014, Charlee was called home; her mission was complete. Just 4 days before she passed, HB105 was officially called Charlee’s law. It may have been to late to help Charlee, but she helped many people to see the importance of having the option to use cannabis oil as a treatment for seizures.

The Nelson family is heart broken as they venture into the next journey in their lives but Charlee will never be forgotten by the Epilepsy Association of Utah and her willingness to help future generations here in Utah.