I did do something . . . I made you

Thank you…

I just wanted to shout out some gratitude for those of you that contacted our Senators! I can’t begin to tell you how much it means to Shane and I…and although Isaiah cannot understand all of this yet, someday he will know how much people cared about him and how loved he is. I will make sure that he knows all the people that “went to bat” for him. All the people that were willing to fight for him. All the people that loved his parents and therefore loved him. Like I’ve said before, I really don’t care for politics. And I’m not one to push my opinions on others…but this is really important!

Most of you that are parents probably didn’t even know that your baby was tested for PKU before you left the hospital with your little bundle of joy. Some of you might have realized that your precious little baby was poked on the heal about 24 hours after they were born – they told you this was the “newborn screening” test. No one thinks anything of it when they do this. That is until you receive a phone call to tell you otherwise. I honestly have never seen a parent receive that phone call. Or watched and waited as a baby is re-tested for confirmation. Or taken to Iowa City within the first few days of life to begin treatment. I haven’t ever seen it…I’ve only experienced it.

It’s a hard pill to swallow when doctors inform you that your child has a genetic disorder that requires a lifetime treatment of specialty formula and foods. But it can be even harder to hear that your insurance company isn’t required to help you with the medically necessary treatment plan. Just the other day, I was speaking with a lady about a disease their family member had. She said “thank goodness for insurance, XXX’s medication is over $1000 per month before insurance”. I had to bite my tongue. She is right. Thank goodness for insurance. Maybe one day I will say the same thing…

I hope that one day I can help a mother that is put in the position I was in. I hope I can offer some comfort to a family that is rocked to their core. I hope that I can listen and tell them that it is ok if they want to say “I understand that your baby has this, but I didn’t want mine to have this”. I can understand those feelings. No one wants PKU for their little one. I pray that Isaiah can grow up and be a role model, much like a 15 year old boy named Dallas, who also has PKU. I’ve heard of PKU children that have gone in front of insurance companies pleading their case for coverage. Children should not have to be put in those positions. People purchase insurance for these situations. No one asks to have many common diseases, just like people don’t ask to have PKU. I hope that people, including insurance companies and political leaders treat Isaiah fairly…not “special”, but normal.

One last thing I hope for……for more people to support the Medical Foods Equity Act. I’ve received confirmation from about 5 people that have contacted Grassley and Harkin for us. I’ve read 3 letters that our friends and family have sent. They are compelling letters! I’m positive I could not have written them any better myself! I’m about in tears when I read the heartfelt compassion people have for our little Zay.

I understand that many people do not fully understand PKU and maybe don’t realize how easy it is to contact our Senators and make a difference in Isaiah’s life. That is ok. It is my expectation that by reaching out I am educating people. Please feel free to contact me if I can help you understand further…

Past the seeker as he prayed came the crippled and the beggar and the beaten. And seeing them, the holy one went down into deep prayer and cried, “Great God, how is it that a loving Creator can see such things and yet do nothing about them?” And out of the long silence, God said, “I did do something . . . I made you.”

Thank you all for being such a blessing to our family!