the Aby

As the sun has set on this Friday night, tonight’s most beautiful light and inspiration is Aby.  We are so honored to introduce the Aby Binkeez for Comfort.

Aby was born July 5th 2013. I had a healthy pregnancy with her everything was fine until she was born. Aby has been in quite a journey her 2 1/2 years. She had been to the university of iowa mayo clinic and Detroit children’s hospital to try and find out what was causing aby’s seizures. Aby was having over 100 seizures a day until 2 years old. She was started on a medication called onfi and that’s what stopped her seizures. She still has spasms but generalized seizures don’t happen very often. Aby currently us on hospice and gas 12 hours a day nursing care. Aby has 2 older sisters kailey and Ellah. Aby’s diagnosis are ohtahra syndrome which is the most severe form of epilepsy and this condition was caused by Aby having a gene mutation on her 9th chromosome called dnm1. She’s only the 9th child with this gene mutation.

God sure has given us a miracle. Her life expectancy was 2 years and she had surpassed it 6 months so far. I can’t wait to see what the future holds for our darling Aby. The life’s she’s touched without speaking one word is pure amazing. Last night she had a very bad seizure and she cried out and I just felt so bad because I couldn’t do anything. She did calm down but I hate watching it. I’m very glad that they only happen not very often. When they do happen I want to crawl in a hole and I honestly did just cry on her and just thanked God that she’s still here with us. Yes being a special needs parent is the hardest loneliest job anyone could ask for but I wouldn’t trade the moments I have with her and her sisters for anything. My girls are my reason for continuing to fight on. I hope all of you have a fabulous day and know that everyone of you are loved and adored.
Bedtka family

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