Rich and Caitlin Hill launch “Field of Genes” campaign in honor of late son
by Rowan Kavner
With their “Field of Genes” campaign, Rich Hill and his wife, Caitlin, are hoping the next family in need finds the answers it so desperately seeks.
Five years after the passing of their son Brooks to a rare disease, Rich and Caitlin chose Feb. 28 — known around the world as Rare Disease Day — to launch their campaign to support Massachusetts General Hospital in its research of rare genetic diseases.
In addition, the Hill family committed $575,000 to the campaign in honor of their late son. The goal is to raise $1 million toward the research of Dr. David Sweetser, who provided Brooks with his full attention and was determined to help the Hill family find the answers they needed.
“The support was incredible from Dr. Sweetser and his team,” Rich said. “He really never gave up. We didn’t find an answer for a couple years after our son had passed. There are families out there still waiting for answers. Genetic testing is rapidly increasing by the week. It’s so expedited now. Everything that’s coming into play, answers are able to be found much faster. But still, that said, the support that’s out there is very difficult to gain because of the rarity of many of these diseases. It’s something that we hope that this can help a little bit and find some answers for families that need it.”
Despite advances made, Rich said testing and support are still hard to come by and much of the testing isn’t covered by insurance. He understands the frustrations parents go through seeking clarity.
“Families come in with stacks of papers and trying to find answers and want to know what went wrong and where they can find those answers to the situation they’re in,” Rich said. “Hopefully, we can help out a little bit.”
The Hills hope the financial support provided will help families find the answers they’re looking for. In addition, it could help in the short term for practical reasons, like fitting a house for a ramp for a child.
“You may not be able to have a cure for the situation that’s at hand, but you can certainly make the quality of life a lot better,” Rich said. “That’s our goal, to help those families and make sure that some of this money can go to good use and help the kids have a quality of life as well.”
More information on the campaign can be found at www.fieldofgenes.org or on Instagram at “fieldofgenes.”
