Senator DiSanto’s office issued a press release today about SB 983 – our Senate companion bill to HB 730. We are thankful that he was willing to help us improve … Continue reading Press Release for SB 983
Below is the text of a document I created and have been distributing to legislators to explain (as simply as possible) the way that Newborn Screening works in Pennsylvania currently … Continue reading Explaining the Current Newborn Screening System in Pennsylvania
I began the day feeling somewhat defeated, feeling as though there is nothing more I can do to help HB730 get to the floor. I had a phone call with … Continue reading From Feelings of Defeat to Knowledge and Hope
We hope you’ve learned something new this month, but we also hope that you’ve been moved to take action.
What can you do?
- Write/call your legislators. It only takes a few minutes, and it can make a huge difference.
- Donate to organizations like Hunter’s Hope so that they can continue funding the Leukodystrophy Care Network and supporting affected families.
- Read (and tell others about) my book, Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph. We want Tori’s story to continue to touch lives and it means so much when we hear about others reading it.
I’ve hesitated to bring any attention to an article which was published this week regarding Krabbe and Newborn Screening because it’s incredibly inaccurate and biased. It has caused quite a stir among us Krabbe families and we’ve been trying to figure out how to respond.
So, while I don’t want to drive traffic to this terrible article, at the same time, I feel that being silent is the worst course of action.
The article was written in response to a law making its way through the Georgia state house to allow parents the option to have their children screened for Krabbe. While the authors make an attempt to sound unbiased, it clearly failed and their bias is evident. The title itself is evidence of that.
Not only did they misquote two Krabbe mothers, but they also reported false information in an attempt to show their bias. They gave false data about transplantation, and they also didn’t talk to any families whose children were successfully transplanted years ago. They were also wrong about the oldest known survivor of Krabbe, among many other inaccuracies in the piece.
The authors chose to interview those who had their babies flagged by Newborn Screening who ended up not having Krabbe (false-positives, which is an inaccurate term anyway for Krabbe; had the doctors handled it correctly, they would have said the baby was flagged for further testing, not that they were “positive”) and discussed the “stress” and “trauma” caused by those two weeks of waiting for the news. I’m sorry, but give me a break. LOSING YOUR CHILD when you could have attempted to save their life is traumatizing but the article said NOTHING about that. Waiting for further testing to be completed, if the doctors prepare them correctly, is not as bad as they portray it. This study provides a look at false-positives and how they should be handled.
Just because you are a medical doctor doesn’t mean that you are automatically an expert on Krabbe. It is clear that we as Krabbe families know far more about the disease, the pros and cons of treatment, etc. than these authors do, and we wish they would have consulted us before writing such a frustrating article.
There are SO MANY success stories not mentioned here, so many children alive and thriving today who would have died from Krabbe had they not had a transplant. And they wouldn’t have been able to receive a transplant had it not been for Newborn Screening. Yet, the article barely mentions these children. Convenient.
For an unbiased look at the lessons learned from Newborn Screening for Krabbe, read this article. Talk to the parents who lost a child to Krabbe, and those who were given the option (THANKS TO NEWBORN SCREENING) and chose to transplant their child to give them a chance at life. Talk to someone who has actual life experience with the disease and don’t rely on articles such as this one.
Newborn Screening for Krabbe is NOT harmful but is essential and beneficial for all involved. We will continue our fight, no matter what the opponents may say.
(You can also read this post, a letter from our friend John Neal to the authors of the article.)
Today I (Lesa) had a meeting with the staff from Representative Angel Cruz’s office regarding the legislation they are preparing to introduce to reform the way Newborn Screening is done … Continue reading Call to Action in Pennsylvania