Hi everyone,

I am here to introduce you to the beautiful and innocent child, Lucy. I am also here to ask for every person that clicks on this page to take the time to read her story, which I’ve added below and to provide whatever you can to help Lucy in her journey. Whether it is kind words, encouragement, or monetary donations that you can spare for her, we appreciate it all. Anything that you do offer to Lucy will be a blessing and a long standing memory for her and her family to have as they reach each hurdle that is yet to come.

First I want to say that we had another GoFundMe page open previous to this one. We chose to create a new one, but wanted to take the time to thank each and every person that donated and supported Lucy and her journey. A total of 34 donors and a total of $4,115.00 was raised between September 14, 2023 and November 3, 2023. I struggle to find the words to describe the gratitude I have for everyone who poured their heart and soul into the previous page, had kind words, motivation and/or monetary donations for Lucy. We love and appreciate you all so much.

Lucy’s story:

Lucy aka: “Lolo” was born on May 1, 2019, a beautiful girl that weighed 6 pounds 4 ounces and measured 20 inches long. This was the start of a new kind of “best days” that most parents would hope for. Three days after Lolo was born she began a battle that only the strongest of children could ever endure.

At just three days old Lucy had her first seizure. Little did anyone know at the time, this would be the first of many. Lucy is a warrior. She has been burdened with this role since she took her first breath in this world. Ten long and what felt like never-ending days was how long it took medical professionals to recognize the battle Lucy was fighting. Lucy went through countless amounts of testing; spinal taps, imaging, blood work - so much blood work - how could a child endure this? The only answer is and always will be that Lucy is a true warrior. All of this testing finally led to her very rare diagnosis, Hemimegalencephaly, aka: HME. This diagnosis will always be a part of Lucy, but it will never define who she is.

HME is a rare neurological genetic disorder in which her genes mutated in gestation causing the left side of her brain to grow larger than the right. These mutated genes cause seizures, often uncontrollable, often resistant to medications, and life threatening.

Countless ambulance trips, hospital admissions, injections, lots of heartbreaks, far too many life threatening seizures, days/nights spent in the ER, ICU and generalized admissions had quickly turned into the normal for this innocent child.

At times Lucy’s 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 mean more ICU admissions.

Lucy is taking three different medications, has recently had a VNS (Vagus Nerve Stimulator) implant and two failed meds, which have yet to give her any true control of her seizures.

Lucy was given a short life expectancy. No parent should ever have to hear doctors say that their precious child would not live past two years old; never be fully functioning, able to crawl/walk/run/speak and that she would likely be permanently disabled physically and cognitively, until one day one of her seizures would rip her out of this world.

Lucy is the sun to her family’s solar system and has the strongest bonds to her brothers and sisters, as they fawn over her every day, and are very much a driving factor for her survival.

Lucy is four years old. She has defied all odds, but not unscathed.

Her mother Janey shares:

Everyone who knows and adores Lucy has had their lives forever turned upside down. They are living a very isolated life, 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 your child naps or plays with their siblings, out of fear of another seizure. Imagine being too scared to leave the house or have friends visit because of the potential exposure of a cold that could put your child into an induced coma from the severity of it on their body.

Imagine your camera roll being full of seizure videos and pictures of hospital visits when it should instead be full of happy memories together as a family. Or being told over and over again that you need to live in the moment and be thankful that your child is here with you. We have learned that it is possible to do just that while still living in chronic fear of what the future holds. Part of our checklist is knowing if a hospital bag is packed. We live in constant fear of hearing the phone ring and praying that your spouse is not calling to tell you, “Lucy is having a seizure.”

Lucy’s family have become full time caregivers behind parenthood with the likelihood of only one of them ever being able to work a career based full time job. So many things have been put on hold to ensure that Lucy has the care and attention she needs. Lucy will always come first over her families goals and aspirations.

Lucy is going to need lifelong support through the help of many different therapies and specialists. We don’t know if we will ever have to be “empty nesters” because Lucy comes first, but the struggles of having no freedom mentally and emotionally because of the chronic fear of what the future holds, puts a strain on everyone.

HME is very rare, more rare to find an adult with it and not because they grow out of it. HME gets worse until it takes lives away. Lucy’s family has spent her entire life learning everything they can about this disorder, to provide better for her, finding the best providers across the country, traveling to epilepsy conferences and working through every option for Lucy before getting to the point that they are at today. Lucy has received a VNS implant through Cincinnati Children’s Hospital and 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, Lucy was recently at UCLA Ronald Reagan Medical Center for extensive pre-op testing. More extensive testing than anyone had anticipated that turned from two days to two weeks of testing. During this stay, Lucy was weaned off her anti-seizure medication in order to capture data on an EEG that was required to make further medical recommendations.

This was the unthinkable, but this was only one step in the process. I sat there, holding Lucy, knowing how dangerous her seizures are. Terrified of what would happen. Missing my other children desperately, feeling devastated by what Lucy is facing and what my other children were facing at home without us.

Step Two: 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 I have to think about how our family will sustain another four to six weeks away from them, all while being out of work and terrified for Lucy’s life, praying that it saves her. Hemispherectomy. This is a word I have been terrified of since Lucy was born. No matter the success rate; I fear it.

Step Three: Our new normal and recovery.

We don’t know what it looks like, just that it is vital that it is done as a family unit. For the family to be able to travel back and forth to see Lucy and I wherever we are because each of our children have their own need for their parents to be present and have our attention. 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 Lucy is seeing her siblings on FaceTime.

By donating to Lucy’s Warrior Foundation, it will allow the family to focus on who needs them the most; Lucy and all of her siblings. This will allow us to be present through the healing process for a minimum of two and a half months, which could turn to longer dependent on Lucy’s progress. 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.

We also understand the impact this will have on her brothers and sisters. The worry and fear they experience daily for her, amplified by such a radical procedure, is heartbreaking. The days to weeks of not having their moms at home to nurture them and talk about their days is overwhelming. It is so vital for them to have their grandparents coming from out of state taking turns to be with them and gives them the extra love and support we simply cannot provide during this process.

Her mother Caitlyn shares:

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 a 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 trying to keep everything and everyone afloat.

Her mother Janey shares:

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 - drown myself in every odd end to make it happen but I recognize that I can’t because I need to be with my family through this.

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 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. Lucy can’t write yet, but Lucy can draw and would love to draw thank you cards for whoever can donate and is willing to send a mailing address. I can’t pay it forward today because I simply have nowhere to turn but I will ensure that we pay this forward by finishing Lucy’s 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.

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In January 2024, Lucy will have brain surgery. There are so many unknowns regarding Lucy’s recovery and what she will need during it. It is unlikely insurance will pay for travel expenses or a hotel stay. Lucy will need to be close by the hospital after she is released following her surgery, in case any emergency were to arise. It is unknown the exact amount of time Lucy will be in the hospital, be required to stay a certain distance from the hospital after release or when she will be able to return to Colorado to another hospital, let alone when she can go home. Insurance will not provide items that are not deemed necessary and there is no way to know what will be necessary until her recovery can be gauged. It is unknown how soon Lucy will be able to do physical therapy to regain basic skills; if she will loose motor skills and if so, how much, or if she will be released with limited physical therapy requirements.

The unknown has led us to the public for help. At least one parent will not be able to provide financially to the family during Lucy’s surgery and recovery period. It is unlikely that insurance will cover anything outside of the hospital stay, even with being required to stay within a certain distance from the hospital for an unknown amount of time. Any donation you can make will go towards travel expenses such as flights, vehicles and hotels. It will also go toward any bills not fully covered by insurance, loss of wages and anything that may assist Lucy in her recovery. There are so many unknowns that we must be completely transparent in saying that we do not know entirely what everything will be used for, but what we can say that it will all be used in any way possible to save Lucy.

If any funds are left and we reach a point where it is no longer needed for Lucy’s treatment/recovery, we intend to donate remaining funds to other children fighting the same fight that Lucy is.

We appreciate you all in this fight for Lucy.

Lucy’s Warrior Foundation