Hearing Aid Coverage for Kids

I need your help. We need to get around 300 more signatures. Did you know that hearing aids for children are typically not covered by health insurance because they are considered cosmetic?

As a parent of a child with hearing loss in addition to other challenges because of PBD-ZSD, I can tell you that Ethan having hearing aids (and possibily cochlear implants someday if his hearing gets to a point that hearing aids can no longer help) is not "cosmetic," it is a neccessity.

Please consider signing this petition and letting the state know that insurance companies should be required to cover hearing aids for children. The leadership team behind the petition has a meeting set with an Illinois elected official, but we would really like to have 1,000 or more signatures on the petition before then. Thank you for signing and for spreading the word. https://www.change.org/petitions/state-of-illinois-legislators-pass-legislation-that-would-mandate-hearing-aid-coverage-for-children#

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"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall it is our hope that in the end that we will bring glory and honor to the Lord. God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit. All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL. We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders. Here are just a few of the faces of PBD.

Glasses --- Take 2

Last night we picked up Ethan's new glasses. Today he wore them for almost two hours in the morning, an hour in the afternoon and 45 minutes in the evening.

The Journey We Are On.....

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