These malformations cause lesions to form as well as seizures that are not treatable by most meds or even natural methods. Trust us, we've tried it all! She was doing good for a few months after her new doctor changed her meds but then in November, she was worse than ever, Here eeg was showing seizures every 5 to 15 seconds. Taking away her ability to walk at times, talk, sleep, eat, you name it! Despite 7 different meds at one time, they just got worse. In February at Queen's Medical Center they agreed to see her even though they mostly only see adults. While we were there they found that she also has another rare type of epilepsy called eses/csws or electrical status epilepticus during slow wave sleep. Her eeg showed that almost 100% of sleep was a status seizure. This disorder start at around 4 or 5 years old and they can grow out of it around puberty. However the damage done to the brain is permanent. It robs them of the ability to walk, eat, learn, speak, etc.
Because of Rowan's paralysis that she was born with and her malformations they decided to see if she was a candidate for surgery in case we could stop this disease from taking everything from her. Luckily, it looks good! Most of the seizure activity is coming from her damaged side. When we were at Queen's it looked as though it was coming from everywhere but the teams in California agree that her other hemisphere looks healthy.
Next month we will be admitted into Kaiser San Francisco and their team along with the neuro team from UCSF will be performing a full functional hemispherectomy of her right hemisphere. We will be basically turning off her right brain and disconnecting it from her brain stem. Her recovery will be long but they are pretty optimistic that she will be able to walk again and that her left brain will take over if it hasn't already!
We can't wait to see her healthy and be able to take a breath! We also want to share her journey so that others can be helped that are going through the same thing. She will need all the good wishes and prayers over the next several months. Please check in to see how she is doing and all her adverntures!!!
I am starting a fundraiser for my grandaughter to help offset the cots of her brain surgery this summer. Her mom Jessica is having to close her daycare for the forseeable future as well as taking an extended leave of absence from her job at the Grand Hyatt Kauai to care for Rowan while they are on the mainland receiving treatment for her epilepsy. Her dad will also have to be away from their plumbing business during her surgery and recovery. There are also things that will not be covered by insurance such as new adaptive wheelchair which she will come home in and extra therapy equipment in the home for her reahbilitation. In addition to the medical expenses not covered by insurance, there is also the added expense of traveling back and forth from Hawaii to California for her dad and siblings during surgery. Every little bit helps during this time including transferrable Hawaiian airlines miles!
We want to thank everyone for all the love an support you have given my daughter's family this last very difficult year as well as all the prayers that have been sent. It means the world to all of us more than words can ever express.
- Mary-Louise Perez
- Patty Ka'iakapu
- Chris Colacino
Organizer and beneficiary
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