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Ainsley Strong

$57,552 of $50,000 goal

Raised by 433 people in 22 days
Created December 30, 2018
Team Ainsley
My name is Rian, I’m a proud aunt! I feel it is part of my duty as an aunt to be the second-best thing to Ainsley from mom and dad. With that being said; I need your help to raise money for my 4-year-old niece.

July of 2014, Ainsley was born and boy I was a proud aunt, she was beautiful. Ainsley has had complications since day one. During birth, Ainsley suffered from a massive stroke that affected her entire left hemisphere and brain stem, which has caused half of her brain to not function properly, she was having seizures which made her stop breathing. We were told she would never walk or talk. Talk about a lot to swallow. My heart broke, our hearts broke.... It was painful to hear that about my niece. Ainsley came out to be a fighter and that she is, she has already proven that the impossible is possible. At 4 hours old she was diagnosed with Epilepsy and 10 months old she was diagnosed with Cerebral Palsy.

Fast forward 4 years, we are battling a new hurdle. The last 18 months, Ainsley has had increased falls- resulting in minor scrapes and bruises, excessive crying, extreme anxiety, complaining of her tummy hurting, lasting for seconds at a time, jerking and crying in her sleep. About three months ago, my sister in law, Brooke called Ainsley’s Neurologist and spoke with the nurse and asked to please help us figure this out. Of course, the doctors just want to increase her medicine, but my brother, Clinton and Brooke stood firm. By this time, Ainsley couldn’t even take 3 steps without falling. Her entire body would just give out on her and then she’d need help getting up.  She was to the point to where she didn’t even want to try to walk.

After, standing firm on not increasing her medication until we got some answers, they finally scheduled Ainsley to have a 72-hour EEG in the hospital in Nashville.  After just 18 hours of testing, the Neurologist came in the room and said that Ainsley's EEG was extremely abnormal and that she has Lennox Gastaut Syndrome.

LGS is a very rare form of Epilepsy, resulting into learning disabilities and uncontrolled seizures.  Finally getting answers as to why she has been falling "drop seizures", all the tummy pain, all the jerks at night..... but NOT what we wanted to hear.  After learning what the heck LGS is, treatment is difficult, because the seizures often do not respond to seizure medications, also known as anti-epileptic drugs (AEDs). The intellectual changes do not respond to any currently available medicine or treatment either. As a family, we were floored and not sure what to think. Still having questions... but getting no- where with the doctors/nurses in TN. My brother and my sister in law have researched hours upon hours to find answers or to find a doctor that specializes in that syndrome to get a second opinion.... Clinton finally found a Doctor at NYU that specializes in LGS.  After days of planning with the New York Doctors, NY hospital, Ainsley got scheduled for October 30th to meet with the specialists. So, they packed their bags and made their way to NYU to check Ainsley into the children’s hospital in the level 4 Epileptic center, for testing for 10 days. Long story short, she does not have LGS, thank goodness but they did diagnose her with “Focal Seizures” which are just as hard to treat. In conjunction, Ainsley has a large cyst on the damaged side of her brain that is over taking the non functioning portion of her brain. Ainsley’s left side, the side that suffered the stroke, has constant activity which interferes with her daily life- while asleep or awake. Even when she is not having a seizure. Currently, it is starting to affect the healthy side of her brain.

Doctors believe that by preforming a Hemispherectomy to remove the non functioning portion of her brain and removing the cyst that will decrease the amount of seizures, medication and try to keep the functioning part of her brain healthy which is great news but that surgery comes with a hefty bill that my brother and sister in law were not expecting.

I know most think, does she not have insurance? Yes, she does, but unfortunately, her insurance is through the state of Tennessee and it does not travel to different states. The doctor bills are coming in from the first time they were in NY and they are not cheap.

They leave this week to head back up to New York, so they can start getting Ainsley ready for surgery and they will be there for a while. We believe, no, WE KNOW this will help the 10 year old, the 21 year old, the 40 year old Ainsley and your help/prayers are needed. We do know this is in God’s hands and He will see her through this!

Any and all donations for this cause will help with all doctor bills

 
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Update 5
Posted by Rian McCall Barger
2 days ago
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Hey everyone!

Happy Sunday! Small update on Ainsley- my mom and I are here in New York visiting sweet little Ainsley and the rest of the crew. I’m not sure how Clinton and Brooke have been so calm through this process with her. I know they are extremely tired but they have pushed through. I’m really proud of them for being consistent the last several months, shows a lot of strength and love towards Ainsley.

Ainsley is so restless and weak. Her little legs look so skinny, but when she’s in a playing mood, she’s super sweet. She has a long road to go still, to gain strength to want to try to walk but we have faith. Mom and I have seen small improvements since we have been here.

We are •••praying••• she gets to come home later in the week, as she’s been begging to do so. Will know more after her follow up appointments later in the week.

Thank you all for being such good friends, supporters, giving love, saying prayers, reaching out. It means the world to me; you all will never understand the amount of gratitude my family and I have towards each and every single one of you. ❤️

All the love,
-Rian
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Update 4
Posted by Rian McCall Barger
9 days ago
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Hey everyone!

A little update on our girl- she’s doing well, better than the doctors thought she would. She’s swollen in her face and it’s hard to open her eyes, she actually uses her hand to hold her eye open to see.... ohhh bless her! She’s in good spirits and is talking about her sisters.

Shes improving more and more everyday and we are beyond thrilled that she is thriving.

Thank you all for the prayers, love, support and donations. We wouldn’t be here if it wasn’t for your help. Thank you so much and God bless!

Much love,
-Rian
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Update 3
Posted by Rian McCall Barger
12 days ago
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Hey everyone!

You all are just amazing!!!!!!! Tonight, we hit 50k, SAAAAYYYY WHHHAATTTT!!!!!!!! What you all have done today, in the last 24 hours has been beyond emotional. I have literally cried all day all while trying to work. We are beyond thankful and forever grateful!

Ainsley is scheduled for surgery tomorrow morning, 7:30 am Eastern time. The surgery could last up to 10 hours and will keep her sedated for several days to allow her brain to rest.

Again, thank you all for helping us reach the goal of 50k. I don’t know what the next several days will look like but we need your prayers.

Please continue to share the go fund me page. Tonight, I have launched a website store “Team Ainsley” to sell T-shirts, tanks, hoodies, toddler tees and mugs . They are pretty neat. Below is the website. All of the profit will be donated to help with the upcoming medical expenses.

On the 19th of January, they have to finish paying the hospital the remainder of the $29,191.80 for their portion.

http://teespring.com/stores/team-ainsley

Thank you, thank you, thank you, thank you! We love you all and GOD BLESS you all!
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Update 2
Posted by Rian McCall Barger
13 days ago
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We are in desperate need of PRAYERS and HELP!

As tears roll down my face, I’m writing this.

Never in a million years, would I think that I would be posting something like this...or even finding Myself in this position. It’s actually more than humbling and quite embarrassing.

This is more than out of my comfort zone and completely out of my control.
I have always been on the other side of giving. So, this post is rather hard for me to write, for more reasons than one.

With that being said, I think anyone that is a parent, would feel and do the same.

So- this is REAL and this is as real as I could EVER possibly be.

It’s come down to the final hours, to help my Baby Girl, Ainsley.

Ainsley’s brain surgery is January 10th, 2019. 2 DAYS AWAY!!!

Finding out today, that Ainsley’s Two Neurosurgeons (Dr. Hidalgo and Dr. Harter) -Whom we love and trust- have to be prepaid. Their portion is $48,705.00. Which is due, tomorrow.

Also, the hospital has given us a 75% discount, which brings Ainsley’s hospital bill down a significant amount, to $58,383.61. We have to pay half of that amount, morning of surgery. That equals to= $29,191.80- DUE MORNING OF SURGERY.

TOTAL:
$77,896.00
We have $30,000.00 and are in desperate need for the rest, which equals to, $47,896.80

I’m sure many of you are wondering, “do they not have insurance”?
Yes. We do and so does Ainsley.
Ainsley has insurance through the state of Tennessee (BCBS Cover Kids) So- it only covers medical care in Tennessee.
Any and all expenses occurred in New York, will not be paid by Insurance.
Clinton, Avilynn and I, do have private insurance through Cigna. The plan is Cigna Connect 800, but no out-of-network coverage.

I’m sharing a gofund me page, My Sister-in-law, Rian created. (thanks Rian)
Please COPY MY POST, REPOST, share and donate if you can.

I am thanking you ALL from the absolute bottom of my heart. Thank you for all the prayers, support and love!
I am forever grateful.

Following this post, I’m going to share Ainsley’s complete story to catch anyone up, that’s not aware of what’s going on.

Please keep praying hard for Ainsley!!!

God bless you All!!

#ainsleybrave
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$57,552 of $50,000 goal

Raised by 433 people in 22 days
Created December 30, 2018
Team Ainsley
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