Jamaica Plain Family Runs Together to Fight Rare Genetic Disease

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At 70, Michael Sack picked up running again for the first time in two decades, and for a very good reason -- his granddaughter Havi Goldstein.

Matthew, Myra, and Havi Goldstein (courtesy photo)

Last December, 2019, Havi, now 2 years old, was diagnosed with Infantile Tay-Sachs, a rare fatal genetic disorder that affects approximately 16 children per year in the United States.

In the past eight months, Matthew and Myra, Havi’s parents, and their extended family have grappled with the profound grief and anger that come with the diagnosis. This summer, Michael and his wife Sandi, along with Havi’s aunts and uncles, Jacob, Erin, Leah and Mike, arrived in Jamaica Plain to support the family.

Sack starts his morning runs before the sun comes up from a rental home in Jamaica Plain with the purpose of raising money for the non-profit Courageous Parents Network (CPN), and will be doing so by participating in this year's virtual Falmouth Road Race, a 7-mile race from Woods Hole to Falmouth Heights.

But it isn't just Sack, nine members of the extended family are participating in the race on August 16 in honor of Havi. They are all raising money for CPN.

CPN is a national non-profit organization and educational platform that guides, empowers, and supports families and providers caring for children with life-threatening illness. Its online guided pathways and videos provide families with resources to advocate for their child, understand medical interventions, share their experiences, and consider end of life and bereavement. And for pediatric providers, it educates them on the psycho-social-emotional aspects of the lived family experience to help improve the course of care delivered and received.

“There really hasn’t been another resource that’s been as comforting and stabilizing and helpful as (founder) Blyth and Charlie (Lord), and I think CPN is an extension of that,” said Matthew Goldstein.

The Lords lost their daughter to Tay-Sachs in 2001, and founded CPN in 2014.

“It is meaningful and validating that both family members  and pediatric providers are running for Courageous Parents Network," said CPN Executive Director Blyth Lord, speaking about the Goldstein and Sack crew, as well as nurses and doctors. "It’s this combination that together cares for children living with serious illness. It feels like a metaphor for the journey they take."

For Havi's father, running means spending time with his daughter in his head. Said Goldstein, “There hasn’t been a run I’ve been on where Havi isn’t right on top of mind.”

“Havi has gotten me up many hills,” said Goldstein's brother-in-law.

The race is also a source of family hilarity and competitive release. Myra, Havi’s mom, is by her family’s accounts a prolific runner, but just had their second daughter Kaia, so she's not running. She is competing vicariously by making Matthew a regimented training schedule with track workouts and interval training.

This year’s race for the Goldsteins and family will start when 10 runners will congregate mask-clad and socially distanced—in the Lords’ backyard in Newton. From there, they will set out separately on the course that includes Heartbreak Hill.

Matthew says he is looking forward to race day for reflecting on how much he loves Havi and what he’s learned from her. And if there is a gust of wind as he hustles up Heartbreak Hill, the type of breeze that Havi turns her face to and “takes big bites of,”  he will think, “There you are Hav. Hi, Hav. We get her with us all the time.”

Taylor Lord is the daughter of Blyth and Charlie Lord