Help Danica Find a Cure

Yesterday morning, I asked my son (aka "little Jason")... if he had one wish, what would it be? His 12th birthday is tomorrow (8/17), so I thought it was an appropriate question to ask. With no hesitation, he replied, "To find a cure for Danica."

And, as God would have it, today (8/16) just so happens to be my own birthday. As such, I must share with you that just keeping Danica safe and alive each day, long enough for God to reveal to us the answer to her very serious medical condition, has been my own hearfelt prayer and wish over the last four years (whether or not it's my birthday). As a mental exercise, I often visualize giving up everything I have here on this earth, if it just meant restoring Danica's & my family's health.

For those who don't yet know me personally, my name is Yana. My husband's name is Jason (aka "big Jason"). We're Danica and little Jason's mom & dad.

For those who do know us, you most likely already know at least a little bit about our family's situation, if not the extent of it, which I'll share as many of the details as I can with you here (far below, in a future update), so that you may be able to better understand why it is we are appealing to you for financial assistance for our family.

The short of the matter is that Danica is a medical anomaly... a very unique case... and, much of the time, her doctor(s) visits & tests are long-distance, are becoming more frequent, and, as we knew they eventually would, will very soon become increasingly out-of-pocket.

As we search for a cure, or, at the very least the correct supportive measure for a health condition the [Western] medical industry has labled as "incurable," we are holding out our hope in Jesus Christ that the Lord will answer the heartfelt prayers of so many of you who have pled for Danica & my family, mercy and answers, on our behalf.

Our family prays to God daily. In our frequent terror, we yell those prayers up to the Lord. Many times, we whisper them in Danica's ear as she lay unconscious on the floor. And, quite often, we weep or wail them in our desperation for an answer... multiple times per day. I also personally find myself singing aloud "Amazing Grace" and various Christmas hymns all year long, whenever it is that my grief becomes too painful for me to bear inside.

My family has tried very hard to keep our burdens mostly to ourselves, but, much of what we've continued to carry over the past few years has just become too overwhelming for us to bear alone.

Many of you have checked in on Danica's current status and have asked us questions. Maybe you've seen a fraction-- a firsthand glimpse or experience-- of what Danica (and our family) endures on a daily basis, or asked us how you can help, or quietly wondered about it, because you don't want her to continue suffering.

So it is in great humility that we're approaching you all here through this GoFundMe account in search of a little reprieve.

We are seeking to address the root cause of Danica's mysterious medical condition and dangerous disability. As we spiral out farther from home in our advocacy of our child and in search of continued help for Danica, more time, money, energy, and resources are needed.

We are also asking for continued financial support to be able to keep traveling together as a family... as two parents traveling long distances with children reduces the strain on just one, who must also manage a dangerously disabled child.

So if the Lord lays on your heart to be able to make even a small donation, we would be very appreciative. If that's just not possible for you at this time, we truly understand, and would be very grateful if you would just keep Danica in your personal, family, or church community prayers, asking our Lord to please lead us to find the cure for her. The cure the medical industry and Google both proclaim does not exist. But we understand that nothing exists without a cause. Even if we don't understand it or the answer is elusive, the reason still exists. We're also aware that God's resources are abundant & unlimited, an amount of which has been left in our earthly stewardship to transfer and redistribute to others as needs among us arise. Whether we are currently in our own season of Giving & Service, or Reception & Acceptance, there's NOTHING that God cannot do, when we are open to Him. He has blessed us by providing for our needs in the past. He tells us in His word that, to receive, we need but ask anything in accordance with His good will in Jesus's name.

We covet your continued prayers for the Lord's guidance for our family in this difficult, ongoing situation, and for His provisions and answers in the health & wellbeing of our little girl.

Thank you for your care and consideration,

Sincerely,

~Yana, big Jason, little Jason, & Danica

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Update: 9/6/2024

We thank you all for your many & continued prayers for our family, and for your outpouring of love and compassion for our little Danica.

Within eight hours of going public, your quick response and generous support met and exceeded the current financial goal we'd calculated. My husband & I were both in tears. Praising Jesus. Humbled to our knees... in moments too weak to even stand. And I, personally, just flat out bawled... multiple times... as we were awestruck by the speed at which your donations poured in.

Yes, you all made me cry on my birthday. ;) And it was one of the best birthday gifts I'd ever received... in that-- though this financial blessing is all intended to support Danica and assist my family as a whole-- I was able to wake the following morning (little Jason's birthday) and sense that an immense, crushing weight had been temporarily removed from my shoulders. I was able to close my eyes and inhale slowly... all without crying... for the moment. So far, that has remained, in regards to any immediate financial burden. I feel like I'm able to breathe deeply again. At least for the time being.

For those of you who don't know us, Danica was officially diagnosed on 12/10/2020-- at the age of not quite five-and-a-half years old-- with generalized ideopathic epilepsy.

"Generalized epilepsy," is defined as "a type of epilepsy that causes seizures that affect the entire brain or a large portion of it, and can impair consciousness."

And "ideopathic," means "relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown."

Since then, we've found out that Danica's epilepsy is:

• Drug-resistant

• Ketogenic diet-resistant

• CBD oil-resistant

...Among other various specifics.

And the definition for "generalized epilepsy" doesn't even begin to describe the nightmare hers is and, literally, has been to our family. However, in our calmer moments while we're describing Danica's condition to others, we gently refer to her condition as "a box of chocolates... because, from one day to the next, we never know what we're going to get."

From what we are able to see, she's had the following types of seizures, with or without prodrome (aura):

Absence/ Petit Mal

Atonic

Tonic

Clonic

Tonic-clonic

Myoclonic

Gelastic

Dacrystic

Febrile

From what we are NOT able to see, and according to the neurology team's official report following her 3-day at-home EEG monitoring test:

Danica is apparently having seizures ALL DAY LONG, EVERY DAY. Even throughout the night.

And so now we better understand WHY she is much slower, sicker, or seemingly excessively more emotional at times than others; why she is often so tired and requires so many naps; why she reacts the ways she does (confusion, hearing odd noises); why there are lapses in her understanding or complete absences in her memory; why there are gaps in what she hears; why we need to repeat things for her so often, and why we must be abundantly more patient while interacting with her.

Our mission is to discover the ROOT CAUSE of Danica's anomalous, problematic, and dangerous condition. And we are doing this with every fiber of our parental instincts and being. Prayerfully.

Along our last 4-year journey, we have refused surgery for her, as we have personally researched VNS, DBS, targeted focal laser surgeries, lobotomies, hemispherectomies, etc., and have learned that they may be just a mere bandaid to mask what can be hidden beneath: the true and causal factor(s). If, decidedly, Danica ends up concretely requiring one of these options, we will cross that bridge when or if we get to that point.

So, for those of you who have recently donated... THANK YOU! Thank you, thank you, thank you... a thousand times over! Your compassion for Danica has greatly blessed us in allowing her to stay surrounded by all three of us-- Mommy, DADDY, and little Jason-- while we are out and about, addressing her medical & healthcare needs. We now plan to travel to all remaining and upcoming doctor appointments together... at least through the end of December 2024.

Your monetary gifts have already been [and will continue to be] carefully used toward the following, or in the following manner:

• Lost wages & continued bill payments while big Jason is out of work to travel with us (bills include mortgage, food, electricity, water, etc.). Lost wages tend to add up quickly, when he's out of work multiple days per month. Many of you already know that big Jason has been our family's sole provider and I am a stay-at-home mom. We have never been an extravagant family and are always extremely mindful to remain in the bracket of living below our means.

• Fuel costs on long trips to doctors. Danica's neurologist and gastroenterologist are both located in Charlottesville, VA, which is a 7-hour round-trip from our home. In August alone (prior to setting up Danica's GoFundMe account) I took Danica (along with little Jason), on my own, to the pediatric neurology department twice... in the span of four days. That doesn't include the other days in that same month (pick any month, for that matter), that we've had to go to and from Charlottesville! So, due to the constant core exhaustion after having to care for disabled child(ren) with no outside help, I've recently become acutely aware of my family needing to remain together. Between Danica's daily seizures and disabilities, little Jason's PTSD and special needs, and my own PTSD... I'm already consistently operating within burnout mode. Not complaining... just a fact.

• Repairs on our family vehicle. This past weekend, a very mechanically inclined friend & his lovely wife came over to our house to help us save money on fixing up our van for our upcoming trip up north. We needed to replace the struts-- which were clunking and as creaky as an old wooden ship-- and recharge the air conditioning system (which had previously been blowing out hot air). Yes, personally, I do consider a vehicular air conditioning system a luxury. And, as such, we'd allowed it to peter out for quite some time; In dealing with that, we'd just roll down the windows... not a problem in springtime. But, with Danica's disability being affected by temperature fluctuations on either side of the scale (even more pronounced in the sweltering heat of summer), the need for A/C repairs had become a necessity.

• Uninsured specialist visits for Danica.

• Uninsured medical tests for Danica.

• Uninsured health-related therapies for Danica.

• The purchase of ongoing targeted vitamins, minerals, and other supplements and neutraceuticals.

So, again... THANK YOU. Your kindness and the reprieve it has brought (and will continue to bring) us for several months has reduced the strain & burden(s) on our minds & hearts.

The van is now trip-ready. We are packing today and leaving for Boston tomorrow, where we will be staying for three nights and two days, visiting with a long-time friend (and his family) who now has a PhD in genomics & gene expression and, in recent reconnection with him, has agreed to take on Danica's case as a personal favor to our family and work directly with Danica's neurology team in the near future. We knew him long before he was an official molecular biologist. Those nights we'd stay up until 4AM with our favorite groups of mutual friends, enjoying homemade delicious multi-course meals, while excitedly-- yet quite civilly-- discussing theology, philosophy, world religions, and politics. The years in our relative innocence and ignorance of understanding life's true purpose and our own need of God. Our years of taking refreshment in honing each other on a regular basis. Our days before the unrealized beauty of having children. And before our years, thereafter, heavy-laden with enduring great sufferings. Or the incremental gifts of wisdom... in and of the years of hardships which were to follow.

After Boston, it is a short drive into Connecticut, where we will eventually meet with Danica's new Integrative medical doctor (aka "naturopath"), next week. We've never been to a naturopath before. All expenses are out-of-pocket for us. Their license(s) also do not cover Telehealth across state lines (at least from CT to VA), so, besides this visit, we anticipate at least one (or more) followup appointments with this team of specialists.

Please understand that worthy naturopathic doctors who specialize in both pediatrics AND epilepsy are, seemingly, very hard to come by. This is one of several reasons we are visiting this specific clinic in western Connecticut.

Note: If, after a reasonable amount of time, we see little to no improvement in Danica's condition with their assistance, we've recently come across a lead for another pediatric holistic practitioner in yet another state. But, again, we'll cross that bridge if or when we get there.

A couple of very loving & willing friends from our old church family will be helping us to save extra money by hosting our stay for the remainder of our time in CT, before we anticipate wrapping up our week with all of them, during church fellowship on Sunday next weekend. These are our fairly stable-- though not completely solidified-- plans... as we must remain somewhat flexible, due to the nature of naturopathic appointments and any following, specific tests which may need to be performed while we are still local.

As for the genetic test (20,000+ marker exome panel with parental contributions) kits we sent out the third week of August: We hope to receive results by as early as the end of September. But they may return as late as the end of October/ early November. After THAT, the results will still need to be decoded.

Ironically, we must now patiently play "the waiting game" as we continue fighting for Danica's life, daily, in our own "race against the clock".