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Community Rallies For New Milford Boy With Rare Disease

NEW MILFORD, N.J. – The community is rallying around a New Milford boy recently diagnosed with a rare genetic disorder.

Benji has a rare genetic disorder known as MPS I.

Benji has a rare genetic disorder known as MPS I.

Photo Credit: GoFundMe

Benjamin Cullere, known as Benji, was diagnosed with MPS I, a gene mutation caused disease that can lead to tissue and organ damage, according to a GoFundMe fundraising page created by his aunt, Alyssa Cullere of Waldwick.

Benji will soon go to The Children’s Hospital of Philadelphia where he will receive chemotherapy and a bone marrow transplant, Cullere wrote. He and his parents – Jason and Tamara Cullere -- may spend up to five months in the Philadelphia area as Benji is treated, according to the page.

Benji’s parents “will take turns taking paid and unpaid leave time from their jobs as well as receiving any support they can from our family. Unfortunately, the bills are quickly adding up,” the page states.

The family has a goal of raising $25,000 – an estimate of the expenses over the next year. Any additional funds will be donated to the MPS Society, the page states.

Nearly $20,000 had been raised for Benji by Thursday morning.

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