Lucy’s Brain Surgery - Epilepsy Warrior

Hello, my name is Landen and I am sharing this with you all in hopes to help Lucy and her family.

Here is Lucy's Story and their family needs from her Mama Janey.

Lucy “Lolo” had her first seizure at 3 days old in May of 2019. Little did we know at that time, that this would be the first of many. Lucy is a warrior. She has had to be since she took her first breath in this world. It took ten days for medical professionals to recognize the battle she was fighting when she was first diagnosed with epilepsy. Lucy went through countless amounts of testing. Spinal taps, imaging, blood work - so much blood work and that’s just the start . This finally led to her very rare diagnosis, Hemimegalencephaly aka HME.

HME is a rare neurological genetic disorder in which her genes mutated in gestation causing the left side to grow larger than the right. These mutated genes cause seizures, often uncontrollable. Often seizure drug resistant

Many ambulance trips, hospital admissions, multiple injections, lots of heartbreaks and far too many life threatening seizures. Too many days and nights spent in the ER, ICU and generalized admissions.

At times Lucy seizures can be extremely difficult to stop and in these cases, she has been required to be intubated in ICU. Even the common cold or illness will continue to land her back in the hospital and potentially means more ICU admissions. She is currently on 3 different medications, and a VNS implant with 2 failed meds which sadly are yet to give her any true control of her seizures.

I didn’t think I would be able to go on when they told me she would not live past 2 years old, never be full functioning, crawl, walk or run. She would never speak, and likely be permanently disabled physically and cognitively, until one day soon, one of her seizures would rip her out of this world. Lucy is the sun to our family solar system and has the strongest of bonds to her brothers and sisters as they fawn over her every day. They are very much a driving factor for her survival. She is now 4. Defying all odds but not unscathed.

Our lives have forever been turned upside down. We are all living a very isolated life and have endured countless sleepless nights, living in constant fear of what the next day may bring and not knowing what the future holds for Lucy

To give you just a tiny snapshot into our day to day life with Lucy behind typical logistics, imagine being scared to use the restroom or take a shower when she naps or plays with her siblings as she may have a seizure. Imagine being too scared to leave the house or have friends visit as their child may give Lucy a cold that risks putting her in an induced coma from the severity of it on her body.

Imagine your camera roll being full of seizure videos and pictures of hospital visits when it should instead be full of their happy memories as a family. Imagine being told over and over how you need to live in the moment and be thankful she is here when in reality even while living in chronic fight or flight you are in the moment thanking the universe for her having just another day.

Always making sure hospital bags are packed.

Awaiting that dreaded phone call from one parent to the other "Lucy’s having a seizure".

We have had to become full-time caregivers behind parenthood with the likelihood of only one of us ever being able to work career based full time until the other is done. I personally put law school on hold because the needs of our family, of Lucy is greater than any aspirations I may have.

Lucy is going to need lifelong support through the help of many different therapies and specialists. We don’t know if we will never know what it means to be empty nesters when it comes to Lucy and that is simply more than okay for us but it offers little to no freedoms mentally and emotionally due to that chronic fear and unknown.

HME is very rare, even rarer to find adult with it, and not because they grow out of it. HME only only gets worse until it takes lives away. I have spent her entire life learning everything I can about this disorder to better provide for her, finding the best providers across the country, traveling to epilepsy conferences and working through every option for Lucy before we go to where we are today. We have traveled to Cincinnati Children’s Hospital for a VNS implant. She is on an experimental treatment plan using a MOTR Inhibitor (chemo medication) to prevent the mutated genes from spreading.

These have had positive results for Lucy, but truly have only served the purpose of giving us time before getting to where we are not. Currently, the only medical treatment for HME is neurosurgery. To either remove a part of her brain where the mutated genes are isolated, or to disconnect the entire left hemisphere, leaving the left side completely brain dead. To determine which surgery is the most appropriate, we are currently at UCLA Ronald Reagan Medical Center for extensive pre-op testing. More extensive than we had anticipated. Our two days of testing has turned into 2 weeks or more. We are doing the unthinkable and weaning her off her anti-seizure medications in order to capture data on an EEG that they require to make further medical recommendations.

The unthinkable, this is all only one step in the process. I sit here, holding her, knowing how dangerous her seizures are terrified. Missing my other children desperately, feeling devastated by what Lucy is facing here and what my other children are facing at home without us.

Step 2: The radical brain surgery. This is one of the most successful operations at stopping seizures in carefully selected patients. I am terrified for this decision. To have to decide if the brain surgery will be the right thing for her, will she be alive, or will the seizures kill her. Then to add to all of this, I have to think about how our family will sustain. Another 4-6 weeks away from my children, out of work, terrified for Lucy’s life, praying that it saves her. Hemispherectomy. A word I have been terrified of since she was born. No matter the success rate I still fear it.

Step 3: our new norm and recovery. We honestly don’t know what it looks like just that it is vital it is done as a family unit. For them to be able to travel back and forth to see Lucy and I wherever we are because each of these kids have their own need to be present with us and need to feel our presence. Lucy has been pulled out of procedures and woken up in pure joy of hearing her siblings voices and the medical teams have been in awe how genuinely happy just seeing them on FaceTime makes her. By donating to us you are helping us focus on who needs us the most and that is Lucy and all of her siblings. You are allowing us to be present solely through the healing process for a minimum of 2.5 months. I don’t anticipate less time but it could be more that she is needing with longer and more significant needs. I have an amazing job that is securing my position but hands on hours can not be made up in a situation like this. There is not enough sick time to cover this. I do not know of a job that covers everything in events like this and still keeps your position.

We also understand the impact this will have on her brothers and sisters. The worry and fear they experience daily for her, amplified but such a radical procedure. The days to weeks of not having their moms at home to nurture them and talk about their days. Caity and I were hesitant to go this route, stubborn and determined. Which is why it is so vital for them to have their grandparents coming from out of state taking turns to be with them to give them the extra love and support we simply cannot provide on our own.

**NOTE FROM CAITY** Janey is ever the advocate for others, all others, no matter what their story or background. But for herself, she is humble and hard headed. So this was not an easy decision to do Go Fund Me. She would rather work 100 hours a week to figure it out on her own but she is literally working herself to the point that she is physically hurt and sick just to try to keep everything and everyone afloat ***

I am in the current position that I have to choose on things in a situation where I feel like I do not have choices.

I would do anything and everything I could to make ends meet on this. To drown myself in every odd end to make it happen but I recognize that as much as I need to be with my family through this 100% present they need me to be with them too.

My first version of this was pages long. I am sure this one is still- I still have so much to share about Lucy, about our experience, our fears and hopes, the impact it is having on our family emotionally, mentally and financially. I am extremely humbled to be in this position, but truly, just taking the time to read a little about Lucy is incredibly appreciated. If you are in the position to donate to help us make it through this season of testing and surgery we are forever grateful.

This is now to the point that this surgery is the only option we have to keep my baby girl alive. I thought about in person fundraisers but honestly I don’t know how and where we can physically be present without risking Lucy’s health further. I am comfortable making weekly updates and sometimes daily. It is important for me to share her whole history and story but her journey too. Whoever donates if you can share your address while Lucy can’t write yet it’ll give us something to do and she can draw thank you cards. I can’t pay it forward today I simply have no where to pour from but I will ensure that we pay this forward by me finally finishing and moving forward with her nonprofit to help others in these situations.

We are very grateful for the love and support of our friends and family. We sadly live so far away from any family but they come here on a drop of a dime when we send an SOS. We all know the financial burden this places on any human

Please if you can rally together and help in any way that you can. Any donation big or small will be greatly appreciated. At the very least, share this story to raise awareness for this cruel, severe epilepsy syndrome that no child or human should ever have to endure.