In this blog you will find many stories we have been experiencing as Stella's parents.
Here we intend to talk about things we've learned during our journey, even though painful sometimes, but surely full of happiness and blessings all the way.
Our primary goal is share with our family and friends all about our daily routine, tests, research progress, and how she fight her way through all the Aicardi Syndrome related challenges.
We also wish to bring awareness about Aicardi Syndrome, and hopefully this blog will attract much attention of research groups, so the Aicardi Syndrome can be more studied in Brazil. Yes, we have a few Aicardi girls in our country, and sadly many others are not diagnosed correctly - thus knowing nothing about their condition.
Share with you our experience as Stella's parents is, above all, a way to also thank God for the beautiful gift He gave us. Definitely when we talk of things that God has taught us through her life, we want to give Him all the Glory and Honor for every single action and word. He is perfect. The biggest lesson for us so far has been about love, that kind of love outrageously unlimited and unconditional. Stella is the manifestation of the Lord's love for us. Our desire is that our family can be the manifestation of God's love for her and for you also.
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| 5 months old |
Thank you for sharing your story. I felt your pain as I read and I felt the love that overcomes that. Your honesty is so real about how a mother feels.
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