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Ainsley Strong

$57,777 of $50,000 goal

Raised by 436 people in 5 months
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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Hey everyone! Just a small update on our girl!

It's crazy to think that we are a little over a month out from her life changing surgery. She has made progress and is gaining confidence every day. She's talking more and telling on her sisters and her grandmothers anddd her mother and father, sooo funny. She's a hoot and makes us laugh.

Please continue to pray for her. She has a long road to recover still but she is on her way. She is going to a lot therapy appointments and making strides.

Thank you all so much from the bottom of my heart, my families heart, and sweet little Ainsley's heart. We are really grateful and thankful to be surrounded by people like you.

I know this is a little off topic but I cannot wait to share this story with her when she's old enough to understand. I know she'll be moved, grateful and will want to pass along all the goodness. I still get worked up over the last few months and believe it or not, it still feels like a dream.

Anyways, I thank you all for the continued prayers!
-Rian
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Hey Everyone! I hope you all are having a wonderful day and if you're anywhere where its cold, please stay warm!!!!

I wanted to give an update on baby Ainsley. She got to come home last Thursday night and is so glad to be home. Her mood and spirits have changed so much in the last week or so.

Her days are filled with a lot of therapy and learning things she once knew all over again. That sweet baby is a fighter and you all have helped with a fight that she is still fighting. Please continue to pray for her as she still has a long road but we have all the faith in the world in her.

I cannot thank you all enough for being so generous, loving and supporting her on this journey and changing her life.

Thank you,
-Rian
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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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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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$57,777 of $50,000 goal

Raised by 436 people in 5 months
Created December 30, 2018
Team Ainsley
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