Community Rallies Behind Young Warrior, Benjamin, Facing Marfan Syndrome and Heart Surgery

Presque Isle, [3/21/23] -Benjamin Simpson, a brave little boy from Presque Isle, continues to fight against Marfan Syndrome and an imminent heart surgery scheduled for April 19, 2023. Diagnosed with a heart defect in utero, Benjamin’s mom, Alexis , soon noticed a curve in his spine only a few months after birth. A series of tests led to the diagnosis of Marfan Syndrome, a rare genetic disorder affecting the body’s connective tissue.

Benjamin’s treatment journey has involved numerous appointments with specialists in orthopedics, eye care, spine, and cardiology. The family has had to travel to Boston for treatment, while also trying various medications and leg braces to manage Benjamin’s symptoms. The ongoing medical expenses have been a significant challenge for the family, as two of Benjamin’s necessary medications are not covered by insurance.

At the age of two, Benjamin underwent his first surgery in Boston Children’s Hospital to address a severe 120-degree curvature of his spine. After months of recovery, including physical and occupational therapy, the family faced more setbacks as Benjamin’s spinal rods repeatedly broke, necessitating numerous surgeries. Since 2020, the family has traveled to Boston every three months for Benjamin’s rod lengthening procedures.

In addition to his spinal issues, Benjamin’s heart condition requires constant monitoring, with appointments every three months. Doctors have tried various medications to slow down the progression of his aortic root dilation, but they recently determined that heart surgery will be necessary. The family received the heart-wrenching news on November 5, 2022.

Despite these challenges, Benjamin’s family remain steadfast in their love and support for their son, who they describe as a true warrior. To help alleviate the financial burden, the Presque Isle Elks Lodge is hosting a Spaghetti Auction Dinner on March 25th at 5:00 pm. This community event aims to raise funds for Benjamin’s ongoing medical expenses and support the family during this difficult time.

If you want to help or donate and cannot attend the supper contact Sarah:  207-551-0618

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