Hello Family, Friends, and other Compassionate Souls!
We are the Lusk family: Aaron, Lori, Clara, Ana Cecilia, and Isaac. We live in beautiful Colorado Springs. Many of you who know our family well know that our two oldest children, our daughters, Clara 8 and Ana Cecilia 6, have battled with severe health issues for years now.
We are raising $70,000 to help Clara and Ana Cecilia Lusk receive holistic health care for their serious, undiagnosed, “mystery,” health challenges! I have tried to break our “saga” into manageable chunks for your convenience. Thank you for reading and for caring about our family and our story!
The Back Story- A Sisters’ Journey
This is the story of Clara and Ana Cecilia’s health journey, which begins when Ana Cecilia (the younger sister) was one year old.
From the ages of 1 to 2.5 years Ana Cecilia had hundreds of seizures. They were diagnosed as “anoxic reflex seizures” and according to the neurologist would “do her no harm and she would grow out of them by age 3.” He was right AC has not had a seizure since about 6 months before her third birthday!
We thought we were out of the woods with this one……..
Enter, older sister Clara……
Clara was a healthy baby and appeared to be developing normally until about the age of 4. At this time we started noticing tremors in her hands and she complained of stomach pain. She also significantly fell off her normal growth curve and has never regained it. It is interesting that Clara’s problems began around the same time Ana Cecilia’s seizure started.
We took Clara to our pediatrician and had her checked out thoroughly. Several specialists saw Clara. A neurologist said the tremors were familial and would become a non-issue as she got older. The gastroenterologist thought the stomach pain didn’t seem like a big deal and the endocrinologist ran several tests on Clara because of her lack of growth and diagnosed her as idiopathic (we don’t know why) short stature. “Wait it out, see us in six months they all said”
When Clara was five I began to notice some strange patterns to her speech. I took her to a speech pathologist who told me she didn’t think there was a problem and if I was still worried in a year to have her reevaluated. During this time Clara also began developing an array of phobias the most severe is dogs.
A year later I wasn’t the only one noticing Clara’s speech difficulties AND I noticed Clara seemed to be having vision problems. So I planned to see the speech therapist again and I took her in to “get some glasses.”
That was a day! Imagine thinking you were going to be in and out of the eye doctor in under an hour with a new pair of glasses and everything would be fine, only to hear that your 6 year old has large, dense, white, visually significant cataracts and needs eye surgery ASAP!
Cataract surgery in a child is a completely different beast than cataract surgery in a 50+ year-old patient. For starters, pediatric cataract surgery is actually two surgeries, both of which are under general anesthesia. And the percentages of a whole host of severe eye and vision related problems skyrockets with any eye surgery. So that’s a big deal at any age, but at 6, it’s a bit much!
Clara’s first eye surgery was just before Thanksgiving, and the second just before Christmas. The cataracts were aggressive and grew quickly. It amazed us that we didn’t realize she has these before we did but the ophthalmologist said it’s very normal as the brain adapts so quickly to the visual disturbances and that often times the child doesn’t realize something is wrong and cannot communicate it. During the time we were waiting for Clara’s surgeries she went completely blind! I had to lead her by they hand through the house. We mostly sat on the couch and listened to television and I read many books out loud to her during this time.
The eye surgeries were successful- meaning that Clara now has 20/40 vision with her glasses. Clara still has depth perception issues and trouble translating space visually. Clara’s ophthalmologist is a pretty amazing person and has acted as an advocate for Clara within the hospital. Both Clara’s ophthalmologist and neurologist were at her bedside when she had her seizure incident last year. (More on that later.)
While during this time the eyesight was the “star player” there were also other things happening with Clara’s speech and fine and gross motor skills, and her general muscle tone. These symptoms together with juvenile cataracts led to a season of testing for some scary conditions!
Praise God every test has always been negative! But still it’s no fun when a doctor says, “We are testing Clara for CTX. She probably doesn’t have it but we want to check. Don’t Google it. Lori do you hear me? Don’t Google it.” I didn’t Google it until after we got the negative result and then after that I always listened to our sweet doctor’s advice not to “Google” all the other terrifying diseases they tested our baby for.
Shortly after Clara’s cataract surgeries she fell under the care of a lovely neurologist at Children’s Hospital. Clara has had several EEG’s, a CT scan, and an MRI of her brain. All appears normal except for a very small cyst on her pineal gland, which I am told again and again isn’t significant. Clara’s current diagnoses are of symptoms NOT the cause of her symptoms. The cause of the symptoms is still unknown: ataxia, myoclonus, nystagmus, epilepsy, sleep apnea, asthma, dysarthria, and idiopathic short stature.
The most disturbing of these are the myoclonus and the ataxia. Ataxia is a lack of coordination, fine and gross motor difficulties, it also presents in Clara’s speech. The myoclonus is an involuntary jerking shaking motion. Clara experiences myoclonus almost everyday. In the last 6 months Clara has only had 5 nights without her myoclonic symptoms.
What does this look like in real life?
Clara struggles with her muscle control and coordination. She tries very hard but she is quite limited in her abilities compared to other children her age. Eating, taking care of herself, and school work requiring writing her very difficult for her. Her speech, is affected by the ataxia and she is quite hard to understand unless you know her well or are listening very carefully, this is starting to be a bigger deal socially since Clara is getting older.
Clara’s was recently diagnosed with sleep apnea as is currently getting used to wearing a CPAP machine and her asthma also seems to be getting harder to deal with. We live at about 6,500 feet above sea level in Colorado Springs. If her oxygen levels keep trending low our family may be looking onto moving to a lower elevation. We may be able to avoid the CPAP and nightly oxygen that way.
A good day is when Clara doesn’t start shaking until around 7pm. She always stops shaking when she falls asleep so this means she only shakes an hour to two hours. A bad day is when Clara starts shaking at 2 in the afternoon and we have to abandon our agenda for the day and get home for her to “rest” (aka shaking in the couch for 5 hours.)
The myoclonus can be unpredictable. It significantly interferes with her ability to fall asleep in a reasonable amount of time, which means mom and dad often lay in bed with her for hours at night until she finally can fall asleep.
Just before Thanksgiving last year both of my girls were hospitalized due to severe neurological reactions to influenza A. Clara was admitted first. She was transferred from Colorado Springs to Denver while in “status epilepticus,”a life threatening condition where your brain is in a state of constant unrelenting seizures. To stop the seizures the ER doctors had to basically shut her body down “Romeo and Juliet Style.” As in Clara has to be intubated because she couldn’t even breathe on her own under the heavy anti-seizure medications.
Clara was in the pediatric ICU with her breathing tube for 4 days. The day after Clara was admitted I found myself in the back of an ambulance again with Ana Cecilia, who though her condition was not as severe as Clara’s, she also was experiencing flu and strange neurological symptoms. Ana Cecilia spent 4 days in the hospital and was discharged one day before Clara who spent a total of 7 days at Children’s Hospital.
Before this event Clara was already under neurological care and was undergoing testing but this event acted as a catalyst that got a lot of doctors interested in looking into what was going on with both girls.
Unfortunately the past year has raised significant concerns for Ana Cecilia again.
Aaron and I noticed AC developing some similar symptoms as her sister. AC and Clara now see the same neurologist and have their appointments together. Ana Cecilia is also ataxic and is developing issues with speech and motor skills.
The most disturbing thing to us now, is just this summer the ophthalmologist found cataracts in AC’s eyes! She actually did check AC’s eyes and Isaac’s eyes when Clara was first being seen and at that time there were no cataracts. The cataracts in AC’s eyes are small but at our last check-up confirmed to be growing. This is the same age Clara was, six years, when her cataracts were found. If AC’s cataracts keep growing she could be looking at the same surgeries Clara had as early as January.
The past year has been FULL with specialist appointments, advanced diagnostic testing, and physical, speech, occupational, vision, and play therapies.
I have been very quiet about our family’s “new normal.”
The biggest reason I haven’t shared in more detail before now is honestly, every ounce of my time and energy is consumed in caring for these kiddos, AND because we never have gotten a clear diagnosis or plan of treatment. As you have read it’s a lot to explain. It usually feels too complicated or too emotionally exhausting to explain the storm of health challenges we have faced the past several years.
The End of the Line…..
The “final” test, which was performed a few months ago, was a complete genetic panel, an exome. That’s ALL 23 Chromosomes of both girls AND Aaron and I. The genetic information was run through the medical database for all known types of genetic diseases and syndromes that could explain what is happening with our girls medically, and the results came back empty handed.
We have been told that there is currently no answer for our family (which in our case also correlates to no effective treatment.) We have been advised to continue seeing our specialists, which currently include: ophthalmology, neurology, pulmonary, and a whole team of therapists in order to manage symptoms. But they are already doing everything they can- and you saw the video.
Our current regime is lots of therapy and one anti-seizure medication that is supposed to help with the myoclonus. It doesn’t help much or at all. The other medications commonly used for myoclonus are often ineffective and are pretty heavy hitters in the side effect category. We will be continuing our current regime alongside our holistic health endeavors.
When the doctor tells you, “We have no idea what is causing your children’s severe health problems and we aren’t going to have any idea any time soon. We will resubmit the genetic data every couple years to see if science has caught up to your daughters.” That’s the time to start pursuing other answers.
It’s not that we have to have a diagnosis. We just want our child to not shake every day, we want her to be able to move and communicate effectively. We want our girls to see! We hope to head off some of what has happened with Clara for Ana Cecilia.
SO, having reached the top of the ladder as far as what the western medical tradition can currently offer us we desperately want to pursue intensive treatment with holistic and functional medicine practitioners.
I’ll explain more below what’s involved with that. I (Lori) have spent many, many, hours researching and learning about a variety of alternative health therapies and have crafted a plan of action and assembled a team of holistic practitioners to assist our family through this endeavor.
However, we need your help financially to get this level of care in a timely manner for our girls! We are hoping to raise all of the money for the girls’ medical fund by January 31rst, 2018! That’s just about 3 months away!
Our eternal optimist, Clara, is growing weary of living with these conditions and we want to begin the healing journey ASAP and get this child some relief! And stop Ana Cecilia’s symptoms in their tracks-possibly stop the cataracts from growing larger!
I’d like to say that we are appreciative of BOTH the western and holistic medical traditions. We have experienced health victories in both traditions and we acknowledge the importance of each medical traditions.
However, as you read earlier we are at the end of the rope (for now) in the western medical tradition and have found no explanations or effective treatments for our daughters.
Our decision to ask for your help in heavily investing in holistic medicine isn’t a rabbit hole, a whim, or grasping at straws. We wouldn’t be asking for your support if this wasn’t something we weren’t willing to spend our own money on (we just don’t have enough of it!) We have been providing holistic treatments for Clara for 2 years and also for Ana Cecilia and Isaac to a lesser degree. We have done as much as we have been able to afford.
Our mindset has been that these treatments are helping and let’s do as much as we can until the MD’s figure out what’s wrong and can “fix” it. So, if you read above, that didn’t happen and isn’t going to happen anytime soon.
Now we are in a situation where holistic medicine needs to become our main source of medicine for a period of time.
We have seen enough results from the small amount of treatments that we have been able to do already that we strongly believe it will greatly benefit Clara and Ana Cecilia.
It is typical with holistic protocols to have a very intense initial time where a lot diagnostics are needed to get to the root cause of illness. The diagnostics we will be pursuing here look at totally different stuff than our hundreds of pages of traditional diagnostics have looked at (and not found anything.) I have pursued acquiring this set of diagnostics through the hospital and the systems that work with insurance, but to no avail. Insurance doesn’t cover these tests or therapies.
There will also be an intense time of healing initially where the girls will be detoxifying and purging the pathogens and toxins we believe are making them ill and they will need a lot of supplements to support their bodies through this phase of healing. Most holistic protocols like we will be doing focus heavily on detoxing, restoring gut health, and repairing cellular function and they take time.
We are committing to as long as it takes to get our girls well! We need your help with this initial thrust! We project that the $70,000 we are raising for our girls will see us through about 18 to 24 months of the intensive beginning phases of this journey. At that point we are confident that we will be able to continue ongoing holistic care for our girls.
Here is a very simple breakdown of how we plan to use the funds:
We plan to work with a well-known and successful practice called Sophia Health Institute in the Seattle area. It is run by an MD who now works in the holistic medical tradition and a team of other doctors and practitioners. You can look it up at www.sophiahi.com.
We have some great holistic/naturopathic doctors here in Colorado however holistic practitioners tend to specialize just like MD’s do. Rather than atempt to piece-meal together a local team of doctors who don't work together, we feel that Sophia has the experience, technology, and all of the pieces together under one roof and that our greatest chance of success is with Sophia Health Institute.
Sophia will require us to visit 3-4 times a year for about two years. We will have monthly phone meetings and access to the doctors in between trips. We will use a local practitioner that will work with us and Sophia for hands on care in Colorado.
The doctors at Sophia will test for viruses, infections, environmental contributors, heavy metal levels, parasites, etc, that could be hidden and the root cause of many of the girls' issues.
They can also assist us with genetic interpretation to discover possible disturbances we believe are present in the girls’ methylation processes needed for cellular health.
We already have the raw genetic data and just need to run it through another database that is looking not for the disease patterns the hospital already checked for but it is looking for certain SNP’s that will give us insight into how to treat the girls most effectively from a dietary and supplement angle.
We are also preparing to work with a nutritionist to help guide us through a rigorous 1-2 year dietary protocol (GAPS Diet) that can have very good results for those with neurological issues.
If funds allow we also may chose to purchase a couple moderately priced machines for detox therapy at home.
How You can Help
Pray: Please pray for our family, for wisdom, for energy, and for continued joy in our trials. For our girls and their specific symptoms. For Isaac that he would be free from all the illnesses that currently plague his big sisters.
Pray for complete healing!
That God and His infinite glory would be made known through their story.
Give: We are humbled to ask such a great sum, but honored that you would feel led to support and bless our family with your financial gifts. We trust that God will provide for our family through our faith family.
We hope to raise $70,000 by January 31rst!
Share: Please share our GoFundMe campaign on your Facebook, Twitter, email lists, and other social media accounts! Please remember us in your prayer circles. The more people who know our story and see our campaign the better chance we have to raise the full amount of support we need for our girls!
The pulse beneath the facts.......
For those of you who aren’t tired of hearing me “talk,” I feel in many ways this writing has been “sterile” as to convey the facts and not write a novel. However, there is so much more than the facts to this story! The facts are scary and disheartening, but out of this set of circumstances has come peace and faith and more grace than you can imagine. The peace of God has dwelt in our midst and His spirit is plainly evident in the unbounded joy our children experience and chose to live in each day.
Anyone who knows our sweet Clara can attest to the ray of sunshine that she is. Of all the things I have seen and all the people I have known nothing amazes me more than this child’s capacity for joy and commitment to hope when more than half of her lifetime has been dominated by sickness.
Clara often asks me “why?” “Why did God choose me to have cataracts?” “Why did God choose me to shake?” All I can tell her is “I don’t know why. But we know that God’s ways and thoughts are higher than ours and that He is good, and that He chooses His strongest people for His most important jobs.” And I don’t know how all this resonates in her heart but I do know she loves Jesus and understands that He is the answer for all of our trails. Not a day goes by without Clara telling me that she is excited for Jesus to return. She tastes His rest and yearns for it.
Ana Cecilia has a heart of deep kindness and concern. She asks, “When will Clara stop shaking”… She is always the first one to want to help. She is the quiet, deeply sensitive one. The one who in some ways I worry about more, but she also has Jesus in her heart and I know He ministers to her in ways only He is wise to.
When all this drama with the cataracts started two years ago Aaron and I both were drawn to reading all the passages about Jesus healing the blind in the New Testament.
The Lord spoke to both of us in John chapter 9. It is the story of a man, blind from birth, and Jesus heals him. When the disciples ask Jesus why this man was born blind, was it his own fault or his mother’s or father’s fault or sin that caused it, Jesus answers in verse 3, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.”
Aaron and I have always felt that the reason for Clara and Ana Cecilia’s eye and health problems are so that somehow through all of this the works of God will be displayed!
At first, the only way I could imagine this being so was a complete miraculous healing and believe me that is still NOT out of the question and I pray for it every day!
But as I have grown through this experience I can also see all the ways God has been magnified and His work is being done. But even in this knowledge my heart wants immediate physical relief for my children!
I hate asking for something without giving anything in return so in closing I would like to leave you with what I consider my 2 best words of wisdom and a poem I wrote:
First, Jesus has done all of our impossible work for us! And for everything else there is help.
Sometimes I find myself muttering over all the “impossible” circumstances I find myself in. “Impossible sickness,” “impossible relationships,” “impossible finances,” etc. etc. In one of these pity parties Jesus corrected me so swiftly I felt it. And He said, “Lori, I did ALL of your impossible work for you. ALL of it. There are no impossibilities if you are walking with Me AND for all those things that seem impossible, you have help- My Spirit!” That was the best thing I’ve ever heard!
Lastly, Be quick to acknowledge that God is Good.
I can’t quite claim this one, but years ago- before life blew up, I heard a testimony from a woman at my church. She told of a time many years ago when she had suffered a great loss, the loss of a child. She told how an older lady from her church had visited her in the hospital and had told her, “Be quick to acknowledge that God is good.” She shared with us how she thought this was such strange advice to give a woman who had just lost a child, but how as she grew through her grief she realized how key it was. And that in acknowledging the goodness of God before you feel it or before you can allow yourself to believe it, it softens your heart and keeps it from growing bitter. Declaring God is good in the midst of our tragedies allows our hearts to remain malleable and allows us, eventually, to transform our pain into compassion.
And I'll leave you with the poem I wrote when all this was but a bud.
Sovereign and Good
in the space where I worry He is sovereign
in deep disappointment He is still good
in long term uncertainty He is unchanged
in battles of chaos that attempt to
every good thing
He establishes my days in perfect order
peace is real
I can attempt in the space deep and long
to say He is unchangeable
to quickly declare He is good
to breathe in the space where the worry takes place
Thank you for reading and for supporting us!
God bless you!
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