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Diagnosing Cailyn's Beautiful Brain

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This GoFundMe is for my amazing 4 ½ year old daughter, Cailyn. She was born a perfectly normal girl & without issue. Today, she's developed into an extremely smart kid who's very quick to learn and adapt while also embracing an unwavering kindness to others. Now we're faced with a new level of uncertainty as to how much we can afford to do to keep that sweetness and intelligence as safe as possible. She has great ambitions to become a veterinarian, but with the added skillset of being a master chef or a Vet Chef as she calls it! 


Maybe this is an old way of thinking, but it's not easy for a father to reach out for help, partly because it might be seen as a sign that he wasn't providing for his family. I don't like the idea that I'd be seen as failing. However, I'd be remiss if I didn't look at my situation objectively and realize these crowdfunding sites are there to help others.  In the past, we've been able to donate money to those in need in a similar fashion. For year's I've always been on the giving end of these things, praying and hoping to never find myself in this position. Alas, that hasn't gone quite as planned.


The Events - Cailyn woke up in late February with complete paralysis of her right side. An hour later she started to regain the use of her right side but quickly begun to have issues recalling words and slurring words. I took her to the ER and after two MRI's, an MRA, an EEG, and Doppler she looked surprisingly healthy with only some slight slowing of her left hemisphere, which is what they were expecting given the right-side paresis. The neurologists were very thorough and gave her to all clear to go home after the long series of tests. We left without knowing exactly what happened and why, but a theory that she might have had a hemiplegic migraine. It’s very very rare especially in a child this young.



After a full month and half of being a completely normal and wonderful little girl, one morning I went to wake her up and she was lying in bed with her eyes wide open. In trying to rouse her for school but she just laid there. A few minutes later she began crying and was inconsolable for a full half hour, I still don't know what finally calmed her down but it was at this point she began to respond to me and answer questions, alarmingly she started complaining of pain in both of her arms. I took her to the hospital after talking to the pediatrician and in the ER she had another episode in front of the physician during an attempt to do an exam. While heartbreaking, this was a good thing as it allowed them to do a proper neurologic exam to see how her neuro functions were failing. With the information from that exam throwing up red flags she was admitted right away and placed on a vEEG. She’s been on the vEEG for three days without an event, and as I write this we are beginning our fourth day of monitoring. 



Why do we need funding? - Simply put, we currently do not have active insurance, with the donations so far from this campaign and our own savings, we're able to afford the initial payment for COBRA [$1450/month and needed to pay March and April payments] and as of now we are waiting for COBRA to become active. Even once it is active our deductible and co-pay for the first hospitalization and this hospitalization will likely reach around $4-6k depending on how long we remain admitted. Combine that with the fact that we currently have no income this will drain us financially.

My wife is 35 weeks pregnant and a full time 4th year doctoral student and I left my job in February and used that time off to take care of my daughter full-time and monitor her more closely while praying she doesn't have another event. We have been living comfortably off of my savings but without coverage I know for certain this hospital visit will quickly change that. My plan was to originally cover 6-7 months of our monthly bills with our savings, but at this rate that will end 3-4 months early with these unexpected bills before my wife and I can relocate.


The funds from this GoFundMe will go towards allowing us to continue testing Cailyn to find out what the underlying cause is for the neurological events. Today we made the choice to keep her on monitoring for another day in spite the costs. We fear the events may be becoming more frequent and that may lead to more violent events and possible permanent brain damage. If we can find the right test at the right time, we may be able to isolate the cause and get a plan together for preventing these events from getting worse. Right now we're not sure if these are some type of focal seizure or a very rare and hard to diagnose hemiplegic migraine. The goal may be adjusted if we have to do more imaging or stay longer, but we're hopeful we can find what we need with the vEEG.

Thank you for your considerations, your time, and your donations. 

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Donations 

  • Anonymous
    • $50 
    • 9 yrs
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Organizer

Shawn Graves
Organizer
Gainesville, FL

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