Learn How Family Testing Played a Huge Role in Transforming the Health Journey of a Newborn

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Genetic testing can be a great resource to get a clearer picture of what to do next when faced with undiagnosed health conditions. It can provide you with essential health information that could improve medical outcomes as well as unlock preventative steps for your family when they get genetic testing as well. The sooner you have a confirmed diagnosis, the sooner you can take control of the healthcare journey along with your healthcare providers as partners.

On June 4, 2021, Rowan Black was brought into the world. The hospital medical team noticed a couple of behaviors they wanted to check on, including some regular grunting, as well as occasional shaking of his arms. After being placed in intensive care for thorough monitoring and a 48-hour antibiotic treatment, the pediatrician established that Rowan was having regular seizures, providing an explanation for the grunting and shaking. His seizures were occurring just 2-4 minutes apart, and he was not responding well to medications.

Toward the end of his hospital stay in early July, genetic testing results suggested that Rowan may have a rare genetic disorder called SLC13A5 citrate transporter deficiency, but it wasn’t until October when his parent’s own genetic testing from Invitae helped reach a definitive diagnosis for Rowan. Invitae’s genetic testing for pediatric and rare diseases helps facilitate early diagnosis, access to available treatments, and next steps for patients and their families. Following the information from Invitae, Rowan’s parents quickly discovered the TESS Research Foundation, a community dedicated to improving the lives of people affected by this difficult genetic disorder. Though it was a scary time, thanks to the definitive early diagnosis, Rowan is a SLC13A5 superhero and a happy two-year-old.

Michael Black, Vice Chair of the Board at TESS Research Foundation and father of Rowan shares his son’s medical journey, the importance of genetic testing, and how the results from genetic testing specifically benefited his family.

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Michael Black is a digital technology professional with a strong focus on the agriculture, non-profit, and charitable sectors. He has a keen ability to blend technical expertise with strategic oversight. Beyond his professional endeavors, Michael is deeply committed to volunteerism, actively contributing to various non-profit and charitable organizations. In his role at the TESS Research Foundation as Vice Chair and webmaster, Michael's personal journey intersects with his professional skills. His advocacy for genetic testing and awareness of rare disorders is driven by his son Rowan's battle with SLC13A5 Epilepsy. This experience has not only made him a champion for health-related causes but also highlights his ability to leverage technology in support of healthcare initiatives and family well-being. Michael's involvement in diverse sectors showcases his versatile skill set and his commitment to using technology as a tool for positive impact, particularly in improving lives and supporting communities through informed healthcare and active engagement in non-profit work.

Produced for: Invitae (pronounced in-VEE-tay)