Friday, February 6, 2009

A Very Late Post

This post should have been up last week. In truth, I have struggling to find the right words. There is a mom on The Nest Multiples Message Board that received tragic news. Her two beautiful girls who are 5 months old have been diagnosed with a disease that has no cure; Sydney and Carynne have the most severe form of Werdnig-Hoffman disease.

Here are Brook's words to describe the situation:

"Both girls have been diagnosed with Werdnig-Hoffman disease. It is a rare genetic disease that is untreatable. We are going in Monday to test our blood as well to see if it is something we passed down to them or if it was a mutation they experienced.

They have the most severe form. Their lungs are going to slowly give out b/c the muscles will not be able to help them breath anymore. They are both on feeding tubes, oxygen at night and monitors. They will never be able to sit up or hold their heads up b/c their muscles just can't take it. They might never talk b/c they have to choose between using their energy to breath or to do other things and they instinctively know to breath. Their brains are fine and they do so well interacting with us and each other. They love to be read to and have toys in front of them, they just can't reach them and hold on to them to play with them on their own.

J and I are going to have to decide how far we want to take this...some babies can make it longer if they're given a trach tube and have a machine breathing for them. At this point we're not sure that we want that kind of life for our sweet babies. We have a lawyer friend who is going to help us draw up living wills so we don't need to make those decisions under emotional distress. I am going to look into taking a leave of absence from work to be with them, but we're not sure if we can do that financially at this point."

We received an update from Brook since then:
"Some good things:
1. We are home. I can't even begin to explain how happy I am that we are home with our babies!
2. I was able to take short-term disability from work so I get to stay home and not worry about losing our insurance!
3. Hospice is coming today to work out our in-home nursing schedule.
4. The girls don't 'hate' the nebulizer treatments...more of a 'strong dislike'.
5. We are having a 5 month birthday party on Saturday. It was supposed to be Tuesday, but we got 12.5 inches of snow so we had to postpone.
6. We have only had one incident of monitors going off when we were coming home on Monday. We think it is because Carynne can't sit up very well in her carseat. I don't think I've ever jumped from the front seat to the back so quickly, but everything turned out ok. Our dr said she would get a prescription for DreamRider carseats so that our insurance will cover the cost.
And most importantly, we have love all around us! I don't know what exactly we can say to express our gratitude...we are speechless"

We are raising money for her family to ease the stress of this time. If you feel lead to do so, please click on the button here or in my sidebar to donate.

Brook has also started a blog - Sweet Girlies


Again, words fail me. A sweet little twin girl, Tuesday, battled cancer and they thought they were beating it. Last week they found out the tumor was growing even more rapidly and sent her home to her family. Last Thursday she lost her battle with cancer, just 2 days after they sent her home. She was only 2 years old. Her family's blog is here. A fund has also been set up in her name.

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