GLENDALE, Ariz. — When your own little boy couldn’t be saved, when the science and prayers and tears couldn’t be enough, then what you do is start over with the other little boys and girls who could be saved, who have a chance.
Brooks Hill died five years ago this week. He was two months old. And so what you do, if you have the strength, is put candles on a birthday cake and sing to him every Dec. 26, and warm yourself by the days you did have with him, and include him in everything you are. Everything your family is. His father, Rich. His mother, Caitlin. His brother, Brice. Their son and brother and inspiration, Brooks.
They, together, are the “we” Los Angeles Dodgers pitcher Rich Hill talks about, and he smiles over it still, and cries over it plenty. This is what Brooks brings to Rich every single day, that and what a heartless disease took from him, his would be 5-year-old boy who was beautiful and so perfect and hardly had a chance.
Thursday, the final day of February, is Rare Disease Day. Brooks was born with a condition that attacked his brain and kidneys, something called Galloway Mowat Syndrome. The genetic cause was discovered two years later.
And so the Hills — Caitlin and Rich — on this day have chosen the next little boy, the next little girl, the next frightened patient, the next parents stricken. They’ll call it “Field of Genes,” and starting with the Hills’ donation it will help fund research in the fields of rare genetic and undiagnosed diseases at Massachusetts General Hospital for Children, and it’ll help ease the financial and emotional burden on the next family, and they’ll understand it won’t solve everything. They’ll also know what it was to have their child leaking away, to not know why, to be lost and terrified, to have it play against a clock that refuses to slow.
They will stand, then, with the hospital and the doctors — David Sweetser, in particular — and the programs that did what they could those five years ago. They will stand with the next generation, the next drop of hope, the next breakthrough. And with the people, real people in too real circumstances, who will know not where to turn. The website is fieldofgenes.org.
“It breaks my heart because I know what the parents are going through and how difficult it is to be in that situation,” Rich Hill said. “Learning on the fly. What is going on? Why did this happen? Did I do something wrong? Did we do something wrong? Is there something we could have done to prevent this? There’s a lot of things that go through your mind. And, who can help me?
“And then it’s kind of a maturation process of the shock to the grief to the ‘OK, we’re going to find answers and find help.’ A lot of the times families come into situations when something like this happens and they’re faced with having to find answers, they go to multiple doctors and they’re gathering up stacks and stacks of paper. All these files are built up. Everybody’s throwing darts at a dart board, trying to figure out what it is that happened, and, again, why did it happen?
“So, when I hear about it, every time I open up the news or read about something or hear it on TV, it’s just heartbreaking, because I know that it’s a difficult situation. Everybody’s road is different. Long roads and, sometimes, shorter roads.”
Rare Disease Day is the momentary spotlight. Then the ideal of it broadens to every day. And the focus of it narrows to a room in a building where the news is confusing, or bad, or worse. And the hope of it is in what might come next. Answers. A cure. A way to manage. Then one more day, and then see after that.
“If one person can be changed or saved or helped, then it makes a difference,” Hill said. “That’s something hopefully we can provide. Just help with this field of genetics that is underfunded.”
They start with one. With Brooks. On Dec. 26, it’s one more candle. On other days, it’s a laugh or a long talk or a gesture that says they know he’s up there.
“One of the things we’ve always done from the beginning is do things for Brooks,” Rich said. “He doesn’t get to experience life the way we’ve been able to, so doing it for him and in his memory is something we continue to do every single day. When that comes around it’s something for us that’s very special, with our son Bryce and with Caitlin and myself, to celebrate his day.”
And, on this day, they start with a foundation for everyone like him and then for the people like themselves. They start with a donation and a hope that leads to relief, somewhere. They start by showing up and taking on some of the life that awaits, that tugs on them still. They’re going to try. They’re just going to try.
“I think one thing that really helped us was a phrase, ‘Just be kind to yourself,’” Rich said. “That was something the hospice doctor told us. Because I think when you get into a situation where the guilt sets in or something — what did we do wrong? Did we do something wrong? In the case of genetics, it’s just something you can’t control. And being kind to yourself and understanding you gave all the love you could and you did everything you could possible to help your loved one is something that may help people, put them a little at ease. I think we beat ourselves up and it’s only human to do that. The other thing we learned was the concept of time. Just understanding we don’t have a lot of it and we want to make the most of it that we can. With the time that we have.”
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