Little Karen Q's Brain Surgery fund

Hi Family and friends,   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 will need more testing.  We have cognitive testing scheduled for March 4, 2019, which requires a copayment of $1250. We will be scheduled for a Meg scan in San Francisco, 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 Karen will have 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:   Immediate/current needs: 1.    Monthly medication costs 2.    Costs associated with testing 3.    Existing medical bills that are due for multiple hospitalizations 4.    Travel costs for Meg Scan in San Francisco 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 Letters from Family and friends:   Dear future donor, After knowing Karen for almost 3 years, I feel like I can share how important this young lady is to us that are close to her. She is a vibrant, loving, and caring soul with so much potential. She strives to be the best she can, though she clearly refuses to make excuses. She has grown tremendously physically and mentally the past 3 years and am ecstatic to say she got into her High school of choice at Wilson HS, her home school. Since her seizures have worsened in the past years, I am asking for your support for Evelyn and Karen as finances are exhausting this amazing mom and want the community to support her in her mission to get Karen back to having a normal life. Please give and give generously. Thanks for your support.  Geoff Shidler  6th grade Acc tech core teacher JLA   Dear donors, When I met Evelyn several years ago, Karen’s struggle with Epilepsy had only begun. At that time they were testing to see what was the cause of her seizures. Once diagnosed, Karen was put on medication. Evelyn worked with her diet as well to help keep the seizures at bay. As Karen got older, her seizures only got worse. I’ve seen first hand what this little girl goes through when she seizes and what it’s like for her and for Evelyn when the seizures are at their worst. I’ve held Karen while she seizes, when she was trying to eat some ice cream. These two are family to David and I. Karen is one of the sweetest kids in the world and one of the most deserving. Though she struggles with this daily, she does her best not to let it get to her, but when she has a large number of seizures in such a short amount of time, as has happened more and more, you just know there has to be something else that can be done to help her. Little Karen has been hospitalized many times for extended stays because the doctors can’t get the seizures under control. Evelyn has had to perform CPR on her own daughter because of the seizures. Still, they just get worse. Karen’s seizures are more frequent and are for longer periods of times.  After years and years of medication changes, diet changes, trying different activities, anything to get the seizures under control, Karen was finally sent to an epilepsy center. There she underwent testing to pinpoint where the seizures were coming from. From the results, the doctors only see one way to rid Karen of this disease that won’t let her have a normal life.  She needs to have the piece of brain causing the seizures removed. Brain surgery. As terrifying as brain surgery seems, it’s been an extraordinarily long road to get to a solution that will help Karen get well and stay well. The insurance company, however, does not cover all of the surgery because it is out of network.  It is not our wish to ask you to donate to help pay for this surgery, but we are left without a choice.  If you can and have it in your heart to do so, please help us help Karen get the surgery she needs. Help us give Karen a chance at a normal life. You can never know the level of gratitude that we feel for each donation. Even if all you are able to give are your prayers, those are gladly accepted. God has been there every step of the way and continues to be there always. We thank you for anything you can provide. God Bless. -Sabrina and David Hancock.  Dear donors,  I had never seen such severity and frequency of seizures with epilepsy like the ones that Karen experiences.  I have witnessed  many occurrences in the car, at home and out in public.   She has been in and out of the hospital more times in the past year than I have been in my entire life! It’s difficult for this bright, energic, loving young girl.  She wants so much to enjoy life as any other kid her age, but can’t.  It amazes me how happy and full of life she has been over the past couple of years, until now.  Now since the seizures have worsened. She isn’t able to enjoy time at school, with her friends,   and enjoy all the wonderful things we all take for granted.   She has become tired, depressed and frightened for herself and her family.  Yes, she is fully aware of the strain this has put on her family. Insurance doesn’t begin to cover all the costs her and her mother have paid out over the years and now there is a surgery that is costly which is not fully covered by insurance that may help her.   I fully encouraged her mother to start a GoFundMe account. I am hopeful family, friends and anyone that fully understand what she and her mother have gone through will contribute whatever they can to help support the financial need for this surgery. Please give whatever you can, no amount is too small to help give Karen the chance for a better life. Karen A Vowell   Hello, My husband and I have known Evelyn and Karen for a little over 10 years now. The last 5 years we have grown closer and pretty much talk or message every day. Evelyn Castillo is my soul sister. I say that because we talk about everything and anything we can relate in so many ways regarding our life experiences. Evelyn is a hardworking, trustworthy, responsible, loving, human being, and an amazing Mother and Father to Karen. I’ve seen firsthand how no matter what, Karen is first in her life, always present and alert. Always with Karen when she needs her. Despite the special care that Karen requires, she treats her as normal as any great Mother would treat her own. Karen is very intelligent, caring, funny, loving and so many more things. I admire her resilience and courage to keep doing her best at anything and everything she does. And why wouldn’t she be this way when she has Evelyn as her Mother. Evelyn has thus far been able to keep up with Karen’s health care when it comes to the costs. Now that Karen is needing this surgery and new treatment that she has started, I know its very costly and that her own health insurance would not cover everything. Asking for help is not easy at times, and if I know Evelyn, she really needs the help to cover medical costs and medication. God is good and I trust that with faith, love, prayer, funds will be raised to help Karen get the medical attention she needs.  Please donate, no amount is too small.  We also ask that you please pray for Karen.   -Vanessa Romero      Dear donors, To know Karen is to love Karen. She is one of the bravest and strongest individuals I have the privilege of knowing.  Karen was born with amniotic band syndrome and has been diagnosed with epilepsy at the tender age of 9. She has struggled with her physical ailments but has never let them get the best of her. She lives each and every day with a smile and happiness that is contagious. Karen has never been negative about her life and we want to keep it going!  Karen will need brain surgery and requires extremely expensive seizure medication.  Please help Karen and her family get through this difficult time. Any amount is greatly appreciated. We are so thankful to have Karen in our lives -Bich Duong Cho   HELP KAREN PLEASE!!! We appreciate all your support and welcome prayers! Thank you from the bottom of our hearts! God bless!