Mar 22, 2019 Latest post:
Jun 26, 2019
Hi Family and friends!
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.
Karen NEEDS YOUR HELP URGENTLY
Karen was born with Amniotic Band Syndrome (ABS). It is a congenital disorder caused by amniotic bands wrapping themselves around limbs, fingers and or toes, and subsequently constricting growth. For Karen, a band wrapped around both of her hands and left foot, and as a result, 7 fingers and 3 toes didn’t fully develop, and they remained webbed (syndactyl). She began having surgery to separate her fingers. By the time she was 5 she had multiple surgeries to her hands and will continue to do so into adulthood.
She was also born with clubfoot, meaning, her feet were completely turned inwards. Karen was casted weekly to correct the clubfoot from the first week of birth until she was 8 months old. She then transitioned into the Dennis Brown Splint, and finally, into orthopedic shoes. She finally walked when she was 18 months old. She has been an unstoppable force since.
ABS did not handicap her or damper her spirits. Quite the contrary, she began to read and write by the time she was 3. She learned to play the keyboard when she was 5. She has always been on the honor roll. She is in accelerated classes and has received several honor roll awards. Her faith in God is also very strong and embodies the saying: “walk in faith and fear nothing.”
Karen began her struggle with Epilepsy when she was 8 years old but was not diagnosed until she was 9 years old. Her seizures have progressed in intensity and duration. Karen suffers from focal (partial, petite) seizures, tonic clonic (grand, generalized) seizures, and cluster seizures (a series of generalized seizures where she does not stop seizing until she is hospitalized).
We have tried the entire spectrum of medication to try to control her seizures. I have taken her homeopathic doctors and have taken supplements and done a Phosphorus treatment. We changed our eating regiment and she is on a modified Keto diet. Nothing has fully worked. We even tried CBDs in May of 2018. The combination of a Keto diet, Vimpat, and CBDs seemed to help for a few months.
In October of 2018, something changed, and Karen began to have uncontrollable cluster seizures. So, began a series of hospitalizations over the last few months with nothing seemingly being able to control her seizures at all. She also began having absent seizures (subclinical seizures). She has had multiple days where she has had 11 to 23 seizures in a single day with most being tonic clonic. They have ranged in duration from 2 to 11 minutes. She has stopped breathing several times and had a collapsed lung. Nothing seems to work enough to stabilize her. It has gotten so bad that the local firefighters and paramedics know us now because she is taken by ambulance to Millers Children’s Hospital in Long Beach, CA so often.
On Feb 1st , 2019 at 12:20 am, she was taken by ambulance and was admitted to the PICU because they were not able to stabilize her seizures. My baby girl seized continuously for 23 hours. At 11:10 pm the night of Feb 1st she had her longest seizure to date, 11 minutes. The PICU doctors told me it was time to be referred to UCLA Neurology to have Karen undergo surgery. They now had the legal authority to override my HMO insurance and transfer her there. We just needed to stabilize her. So, they administered one last cocktail of drugs to stabilize her if that did not work, they would have to induce a medical coma. I prayed so much God would allow for the medication to work so that she was stable and able to be transferred to UCLA.
God heard my prayers and that combination of medication stabilized her. We would now be transferred to UCLA. While we waited for a bed to open at UCLA the medication caused Karen to have psychosis. She began to hallucinate, have paranoia, she was emotional, very confused and unable to stand on her own. It was terrible and heartbreaking. Doctors began lowering the dose of meds and Karen began to behave like her normal peppy self.
After 5 days we were finally transferred to UCLA where she was placed on a Video EEG immediately. Over the next several days she had an MRI and a PET scan done. She began to seize, and they were able to capture several seizures.
We were told that with brain surgery Karen will be seizure free. She will be able to live a life where she is not constantly seizing.
Before receiving a surgery date, she has undergone an MRI, a Pet Scan, cognitive testing, and a Meg Scan in San Francisco. She is scheduled to have a Functional MRI on 3/26 and an additional EEG where they will open her skull and place electrodes directly on her brain to confirm the location of the brain where the seizures originate from. Once that is completed, we will be given a surgery date for brain surgery.
We are now home but Karen has not been stable at all. She has seizures every day. I have not been able to work since Feb 1st because she requires my attention. I am a single mother and have always provided fully on my own. I have never asked for financial help and have done what was needed for Karen, but I am now financially depleted. I am no longer getting paid, my savings are gone, and my credit is exhausted. We need help.
My insurance is a high deductible HMO (the best option offered by my employer) and copays are extremely high, not all her medication is covered (monthly cost is $3100), and because we were referred to UCLA it is considered out of network and therefore have higher out of pockets copays.
My Karen is the strongest, loving, kind-hearted, compassionate, happy, intelligent, empathetic human being I have ever met. She is always smiling, thinking of others, and fearless. She is an inspiration to everyone she meets. In June of 2018, she received Most Inspirational Student of the Year.
Karen chooses to be happy. She has taught me that happiness is a daily choice. She has taught me that there is no need to fear because despite the immediate circumstances it is already getting better. She has taught me that life is too momentary, so it is important to live an extraordinary life.
Karen deserves to live a life that is seizure-free. A life where she is able to function like any 14 year old. Please help HER. Help her LIVE. Our faith is strong and welcome any donation. Nothing is too small, and prayers are welcomed too.
I thank you in advance for taking the time to read Karen’s story and pray for your well-being as well.
Below is a list of what our current and future needs are:
1. Monthly medication costs
2. Costs associated with testing
3. Existing medical bills that are due for multiple hospitalizations
4. Costs for Functional MRI
5. Supplemental income to offset financial strain
Immediate Future Needs:
1. Costs of open skull EEG
2. Costs of brain surgery
3. Costs associated with rehabilitation
4. Supplemental income to offset financial strain
￼ HELP KAREN PLEASE!!! Thank you from the bottom of our hearts! God bless!
Thank you for visiting and for the prayers! It takes a village and with your help Karen will be seizure free and have a chance at a normal life.