Dear Carver Lab,
My child had blood drawn at our local hospital and we submitted the sample to the Carver Lab late last year. Like every other parent, we are very anxious for the results.
We plan on attending a meeting to hopefully get some more information, insight, and questions answered about our child's LCA diagnosis. We will be face to face with some of the top specialists and we would hate to miss the opportunity to learn more about our child’s specific genetic variation.
I don't know how your process works as far as doing the testing; I understand it is a long process. My question is this: is there anything that can be done to hopefully give us an answer to what gene mutation my child may have before the meeting this summer? I do understand this may not be feasible, but if there is ANYTHING that can be done, you don't know how greatly appreciated my family would be.
Thank you from the bottom of my heart for your organization. I can't wait to hopefully have the last puzzle piece to our child’s condition. It has been an emotional year.
Regards,
(Anonymous)
Dear (Anonymous),
Thank you for contacting the Carver Lab with your inquiry. Yours is a heartfelt note and we certainly understand where you are coming from thanks to the many notes and letters we receive very much like yours. Many of us working in the Lab are parents just like you. We know what it's like to want – and need - to know anything and everything we can when it comes to the well-being of our children.
Our research experts will do everything they can in the Lab to meet what is the ESTIMATED turnaround time for this test. Sometimes they are able complete tests early if all the countless variables in the Lab come together as planned. Sometimes these "variables" result in the need to extend the turnaround time. Molecular genetic tests for very rare diseases are not something that can be rushed.
Here is something we share on occasion when people feel most anxious:
We know you and your family are anxious to have the answers you seek. We hope you’ll agree when we say that from our point of view, considering the potential impact genetic testing can have on an individual and his or her family, we believe the accuracy of the information we provide is more important than the speed at which we deliver it. We’re doing our best to meet both expectations as best we can.
We hope to have news for you by the time you leave for your meeting. Unfortunately we just can't guarantee it.
Regards to you and your family,
The Carver Lab Team
John and Marcia Carver Nonprofit Genetic Testing Laboratory
University of Iowa
www.carverlab.org
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