Ainsley Strong
Donation protected
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
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
Fundraising team: Team Ainsley (2)
Rian McCall Barger
Organizer
Clarksville, TN
Megan Ashby
Team member
