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For the love of Sophia

Barry Chin | Globe Staff/Globe Staff

NEWBURY — Sophia Jackman turned 2 in May, but she won’t be walking or talking anytime soon. Such things aren’t possible when you barely grow.

Born with a rare genetic disorder, Sophia has gained only 5.5 pounds since birth. She weighs a mere 11 pounds, even though she spends up to six hours a day eating through a bottle and feeding tube.

Caring for Sophia involves all-day management of her incurable condition, known as rhizomelic chondrodysplasia punctata, a life-threatening form of dwarfism that occurs in fewer than one in every 100,000 people. Poor eyesight, stiff joints, cognitive impairment, and respiratory problems ensure that no day is easy for Sophia or her primary caretakers: her 20-year-old single mother, Colby, and her grandmother, Eva Jackman.

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The three-generation family — including Sophia’s grandfather and Eva’s husband, Fred Jackman — lives together off the power grid at the end of a dirt road in rural Newbury. A windmill keeps the lights on and a generator kicks in when needed. It’s a hopeful life, under the sobering prognosis that Sophia might not live more than a few years.

“The doctors tell me she’s not going to do this or that, but I believe that she will do anything that she puts her mind to,” Colby said. “She already has. She’s already beating the odds.”

Challenges notwithstanding, the family finds delights aplenty in what it understands to be a unique, God-given child-rearing mission. Each day is peppered with little victories as Sophia snuggles up to Wormy, her stuffed toy, laughs loudly at noisemakers, balances upright for two or three seconds, and becomes fascinated with things that light up.

“Our goal is to just bring her joy,” Eva Jackman said. “If she’s frustrated, she won’t be happy. She’s enjoying the life she has here.”