When Giselle was 5 years old, we discovered that her frequent giggles and smiles weren't just because she was a "happy" little girl. Instead, we were told that she had a very rare form of epilepsy and was experiencing gelastic seizures , which cause laughing every time they occur.
We learned that these seizures stem from tiny, benign tumor located deep in her brain called a hypothalamic harmatoma and that only 1 in 200, 000 people are diagnosed with this form of epilepsy. We also learned the devastating news that she had likely been having seizures since the day she was born, that they can cause learning disabilities as well as severe memory issues if left untreated. At 9 years of age, Giselle has a minimum of 5-10 seizures a day, 2-3 during the night, and suffers from learning challenges in math, reading, and spelling. She also has difficulty with coordination, concentration, and short term memory.
Since her diagnosis in 2013, we have been on an intense, emotional 4 year journey to find a solution for her seizures. She has seen many neurologists, epileptologists, and specialists at two different hospitals as well as undergone several EEG's, 4 day overnight Video EEG's, MRI's, MEG tests, PET scans, lab testing, and 5 different kinds of medicine. The end result has lead us here:
1. Her seizures don't respond to medication at all
2. The only viable solution is laser ablation surgery
With this in mind, we were fortunate to be referred to Dr. Daniel Curry, a surgeon who specializes in laser ablation surgery at Texas Children's Hospital in Houston, Texas.
Laser ablation surgery is a minimally invasive brain surgery, that utilizes MRI guided technology along with a special laser used to damage the tissue causing the seizures.
After 10 days of intensive assessment and testing at Texas Children's Hospital in January 2017, Giselle was approved by Dr. Curry's team to undergo this procedure.
On August 6th, 2017, we will travel to Houston for 14 days where she will undergo another MEG scan, MRI, Functional MRI, and lab tests as well as spend a week on steroids in preparation for her brain surgery on August 11th. The expenses of spending 2 weeks in condos and hotels, plus travel costs along with meals, medical bills, and the lack of my ability to work over this time as I care for her will cause considerable hardship for our family. The funds generously donated will help us offset these costs and allow us to focus completely on Giselle in preparation for this surgery and during recovery. As many of you know, I am Giselle's sole parent in Marin County as her father lives 4 hours away. While we share joint custody, I take care of her 98% of the time on my own.
As to be expected, I am overwhelmed emotionally, extremely hopeful for a resolution, and anxious beyond reason. It's with every fiber of my body that I pray for a seizure free life for Giselle. She is a radiant light, so brave and courageous. She is 100% ready for surgery and to live her life without seizures.
- beverley murphy
- Melanie Peel
- Jayne Brodie
- Renee & Dylan Hassle
- Maggie McKay
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