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Erin and Wesley Cleveland of Winder, GA can still remember every
detail from the night they found out Erin was pregnant. They were so
excited and immediately started planning to become a family of four!
Erin knew in her heart instantly that this would be a girl. She
already had her perfect boy Tanner, now a senior in high school, and
this time God would bring a princess.
At the 20 week ultrasound, the Cleveland's were told that their
baby had a curve in her back, therefore a cesarean would be the only
safe way to deliver. They had no idea until after she was born that
anything else was wrong. Lainey made her early arrival on Thursday,
May 16, 2013 at 4:23pm. The family instantly was head over heels in
love. Unfortunately, the days that followed were not as blissful.
Lainey spent her first night in Erin's room but the next morning was
moved to the NICU where she stayed for 9 long days.
The morning after Lainey's birth doctors told the Cleveland's that her left eye never fully developed and she would most likely never be see properly. They ran a series of tests and diagnosed her with micropthalmia and coloboma. For the next 3 months Lainey was developing ahead of schedule, so her parents came to terms with her diagnosis and began making plans for her future.
At three and a half months, Lainey started to have shaking and jerking movements but her doctor's told them it was normal. In less than a week the shaking drastically increased and after a trip to the local ER, Lainey was immediately admitted to Scottish Rite. Erin felt in her heart that something was terribly wrong. After a battery of tests the scans showed abnormality in her brain and Erin and Wesley received the devastating news their daughter had Aicardi Syndrome with Infantile Spasms. She was immediately put on heavy steroids and medication to try and stop the seizures and is currently on taking Topamax daily.
Aicardi syndrome is a rare disorder that occurs almost exclusively in females. The three main charistics of Aicardi are absent or underdeveloped tissue connecting the left and right halves of the brain, seizures beginning in infancy that progress to epilepsy, and chorioretinal lacunae, which are defects in the light-sensitive tissue at the back of the eye as well as other other eye abnormalities.
For Lainey, the Aicardi diagnosis encompassed all of her medical issues and was a huge blow to her parents. The last 19 months have been a whirlwind of trying to control the daily seizures as well as doing what they can to help improve her vision. Since the start of her seizures, Lainey has fallen behind in her development, and has missed all her major milestones. She doesn't fully have the use of her hands and is unable to sit or crawl. Lainey has weekly OT and PT therapy sessions. She sees an ocularist, neurologists, orthopedists, and sees her ophthalmologists every 2 - 4 months. Doctors will most likely be casting her back in the next few months to help correct the slight curve as well.
Through all of this they are not sure what Lainey can actually "see." Originally the Cleveland's were told their daughter would be blind. Then they were told she would have slight or blurred vision but not sure how much more she might see. Surprisingly, Lainey does have complete muscle control of her eyes so it always appears that she is looking. The Clevelands have decided to go ahead and expand her small eye sockets to give her the greatest chance to see. Unfortunately, at the last minute their insurance has denied the expander procedures, even though had begun the process and the first appointment was scheduled for February 3rd. On their own, the Cleveland's raised the $650 need for this first visit. They feared if they were to wait any longer the beginning expander they made for her from Lainey's last sedation will most likely not fit. They don’t want to risk another sedation and hospital trip that would also not be covered to make a new expander. All of the steps are in place and if they begin in February, the hope is to have the final expansion completed by summer.
Please help us raise the remaining amount needed to fund Lainey's eye socket expansion, including the after care and supplies needed that insurance won’t cover.
Lainey deserves a chance to see the world, and Ride to Give can help that happen.
You may follow Lainey story on Facebook at facebook.com/lovinglaineybug.
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