Ella is a Miracle

Miracles are all around us. Those close to me know My niece Ella was diagnosed with a rare condition called aicardi syndrome. Ella was born on mothers day of 2006.to my sister-in-law, Erin. Erin and I had planned to get pregnant together. For years we talked about how wonderful it will be to go through a pregnancy together. This was Erin’s first baby and I expected to be there from beginning to end.. Because my pregnancy was so intense I missed a lot of her pregnancy and birth. The day Ella was born my last two babies came home. It was a happy day for us all. As I was trying to grasp having 5 new babies Erin was figuring out motherhood. I missed seeing her and talking with her. Every now and then she would stop my with Ella and we would admire all the kids together. 4 Months later our smiles turned into tears when Ella was diagnosed with Aicardi. For those that don know what this is it is a Moderate-to-severe global developmental delay and mental retardation are expected. Girls with Aicardi syndrome often develop seizures prior to three months and most before one year of age. Ongoing medically refractory epilepsy with a variety of seizure types develops over time. Costovertebral defects are common and can lead to marked scoliosis in up to one third of affected individuals. Other features include characteristic facial features, gastrointestinal difficulties, small hands, vascular malformations and pigmentary lesions of the skin, increased incidence of tumors, lower growth rate after ages seven to nine years, and precocious or delayed puberty. Survival is highly variable, with the mean age of death about 8.3 years and the median age of death about 18.5 years.
Ella’s seizers were happening more and more sometimes up to 10 times a day. We were all heart broken. Then Erin discovered a treatment for patients with seizers. It is a diet that made the body think it was starving.It is a high fat diet and very monitored. This diet dates back to biblical days. Ella’s condition began to change and she started sitting up, crawling and pulling herself up. The seizers slowed and then stopped. We were all still afraid of getting to our hopes up.
Last week Ella went into the doctor and Erin was told Ella was misdiagnosed. She does have seizers however, the doctors now feel they may never come back. And if they do she will have mild epilepsy.
God is at work in this family. My sisters baby being cured of cancer. And then Ella and the quints.
I just want to let both of my sisters to know they are amazing for what they have been through and I am so very proud of them. our entire family is thankful for gods grace. I love you all!!
Auntie Courtnee