Tuesday, May 1, 2012

pushing the envelope

Almost 2 years ago the French stumbled upon a drug that could theoretically help Mighty Z's disease. Some think it could be a cure.

I don't feel that I will throw Mighty Z's ventilator in the trash (although the thought sounds fantastic and scary at the same time).I do feel the drug could help Mighty Z during the day.

 Most CCHSers (Congenital Central Hypoventilation Syndrome)  only breathe 15 breaths per minute, I know for a fact that Mighty Z only breaths 15. If this drug could raise her respiratory rate 10-15 points higher imagine how her daily life could change.

The drug is Desogestrel a birth control pill. In the study that I have read it talks about a 19 year old and a 30 year old both women who have CCHS (Congenital Central Hypoventilation Syndrome) took desogestrel both  patients  reported respiratory sensations and marked anxiety over breathing that they had never experienced before.

When Mighty Z turned 3-years-old, a life-changing option was dropped in my lap. I had heard about diaphragm pacers, which are surgically implanted and make the body breathe seemingly on its own. But, the decision to have her undergo a dangerous and experimental surgery was a difficult one for me. It was dangerous, but I stood up to the fear.  I was trying to make her as normal a child as I could, to give her a normal childhood,It would’ve been a lot easier and a lot safer to keep Mighty Z on her machines. But I had to let her have a chance.”

Now Mighty Z is 11, and another life-changing option has dropped into my lap. She will be the youngest in the world with her disease to take desogestrel. Yes the old fear is back, the what if's and the knowing disappointment if it doesn't work.

Why do I keep pushing the envelope when it comes to Mighty Z's treatment? Maybe it’s because my daughter lives on the verge of dying with each breathless moment and yet doesn’t seem to have an ounce of quit in her. 

And I will continue to fight for her potential, because that’s what parents do for their children.

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  1. Shelley, you are doing the best for Z. Thank you for share this experience. Now we are living this fear of implant the pacer in our boy Tiago. Z is a reference for us. Be with God.

  2. I truly admire you and Zoe. I know that you have put a lot of thought into this and you are doing what you feel is right for Zoe. It would be so amazing if this pill works for our kids. I wish you and Zoe all the best.