The most obvious would be her eyes. During my sister’s pregnancy, Lainey’s left eye never fully developed. We had never heard of Microphthalmia before this but its a very rare condition that causes the eye to never fully develop. Along with this condition, she also has a very rare condition in both eyes known as Coloboma. We are uncertain what she will be able to see in the future, but we do know that she does have some form of vision in her right eye. When she was 3 weeks old she started a process to expand the eye socket in her left eye. Eventually, she will receive a Scleral Shell for the eye that will perfectly match her right eye. We were recently told that her insurance would no longer cover this expense. She had just been in the hospital and put under sedation to have a new expander made, and now she is unable to receive it. It is a very expensive process and one that is not easy to cover. My sister has been her primary care taker because not only does she suffer from vision issues, she also suffers daily from a catastrophic form of seizures known as Infantile spasms along with her diagnosis of Acairdi syndrome.
It has been a long and uncertain road for their family. They are not a family that has ever or would ever ask for help unless it was necessary. This we feel is necessary to get Lainey the care she needs. The Ocularist that she sees for this is willing to work with them on the payments. However, just for the next step in this process they are looking at close to $7,000. Hopefully, she will be able to go at least 5 years after this before she will need any additional shells made. She does amazing work and has been a great asset to the team of doctors that are afflilated with Lainey. Thank you for taking the time to consider this sweet girl.