#courage4Lyonscubs Medical Fund

$2,810 of $15,000 goal

Raised by 54 people in 17 months
What started out as seizures that we thought were controlled by medications, turned into a journey that our entire family is affected by.  Having 5 children is a blessing.  Raising 5 kids can be expensive, but raising 5 kids where 3 of those are medically complex is another story.  It is one that has pushed our family to our financial limits.  These 3 children, Carley, Greyson and Landon all share the diagnosis of Chiari Malformation and Ehlers Danlos Syndrome.  They each have their own other conditions that they suffer from  as well : hydrocephalus, epilepsy, syringomyelia, POTS, Mitral Valve Prolapse are just to name a few.  Between the 3 of them they have had 4 brain surgeries, 15 other surgeries/procedures and over 20 scans.  Within the next 12 months 2 of them are facing more operations.  Due to their most recent diagnosis of Ehlers Danlos, it has left Landon in a neck brace for the majority of his day because his neck is very unstable because of the complex surgery he has had.  These children push through their daily pain with a smile on their face.  They have not had a chance to be a child and do typical childhood things. 

Their new neurosurgeon is in NYC and that requires a lot of travel, hotel cost, and out of pocket medical expenses.  Our family will be separated for weeks at a time during their surgeries.  We are turning to our community for support.  This is a lot for a family with just 1 child to face, but having multiples has made it more challenging.  It will not stop us from getting them the care that they need, but the support we receive will ease the burden. 

These children deserve a childhood free from pain and that is what we are hoping this doctor can help give them.  Please consider making a donation to this cause.  If you would like more information about their conditions or their treatment, comment below.

You can follow their journey and learn more at:

https://www.facebook.com/courage4lyonscubs/





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We received his first care package today via Amazon! His face says it all. In patient for a bit longer and missing our family
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Our neurosurgeon called Rob at home to check in not knowing he was home. He told Rob to have me call him. So now here is our new plan:

His hydrocephalus is a raging maniac and out of control. We are going to drain the 20cc every hour and Monday morning back in the OR for either an external shunt from his Omoya on the top of head or place an external lumbar shunt. We are here for 4-5 days after that and hoping this plan works. If it does not work he will get a shunt placed. His ETV is working for his hydrocephalus, but he now has ICP.

I will most likely be extending my stay past the 6th, which means that my family at home is going to rely on daddy for a lot longer. If you feel led to offer help in any way, please do so. I'm trying so hard to be strong, keep checking in on my family, but it's proving to be a bit much.
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1 week from tomorrow I leave my family for 3 weeks to get Landon the surgery he needs to give him his life back. I have never been away from my family for more than a few days without seeing them, even if it was short hospital visits. Emotionally, I am not ready for this. I do not know how they will do without me. They are a lot to take care of when they are "healthy" and lately that hasn't been the case. It's times like these where I really wish we had more family. With the help of only a couple, we have managed on our own, but that's with me being here. Chiari has changed our lives forever. It has brought us close to people we didn't know but only because they are fighting similar battles and pushed away those who think our life has too much "drama".

This next week is filled with getting ready, surgery for Carley, school appointments, creating daily routine charts and emergency plans for those helping, organizing the house so people that aren't me know where to find things, and then trying to find time to take in every minute with my kids. They are my world.

3 weeks of me away in NYC is also a financial hardship. It's 4 months of our mortgage to be there just for the hotel alone. I know this is temporary, but it's still a lot.

Thank you to those who have reminded me how strong I am and this will be ok.
♡♡♡♡♡
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I was informed today that our NYC stay for Landon's surgery is 9/18-10/6 (his 4th bday). Unfortunately the Ronald McDonald house is not open for anyone except oncology families due to renovations. The hotel near the hospital is $300+ a night. We will have almost 2 weeks at the hotel between pre op and post op medical clearance. We thank everyone for the love and support you have shown our family.
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$2,810 of $15,000 goal

Raised by 54 people in 17 months
Created May 3, 2017
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EH
$50
Elizabeth Hartnett
12 months ago

Prayers for health for all your kiddos!

JH
$25
Jaime Hashey
13 months ago

Lisa, I think of you and the kids often. While you are in the city, if you ever need a place to stay, a hot meal, or just a large glass of wine, please come visit us! We are about an hour from the city by train. Take care of yourself, and good luck with everything.

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