Benjamin’s Boston Marathon

Benjamin Joseph Brackman was born on October 7th 2019 at Geisinger Medical Center in Danville, PA.

He was born with a previously undiagnosed congenital diaphragmatic hernia meaning a hole in his diaphragm allowed his bowels to fill his chest cavity stunting his lung development in utero.

He was also diagnosed with Arthrogryposis meaning he had multiple joint contractures at birth including his feet, knees, hips and left wrist. He was also diagnosed a few days after birth, during a routine MRI of his brain with Polymicrogyria. This is a congenital disorder in which some portions of his brain have many extra folds. In Benjamin’s case this affects his speech and motor skills. It also places him at a high risk for seizures.

He was life flighted to the Children’s Hospital of Philadelphia hours after birth where he remained on life support until his life saving thoracic surgery on October 9th.

My husband and I stayed with Benjamin for 3 weeks in the NICU following his surgery cheering him on every step of the way.

After coming home from CHOP our lives were turned upside down with uncertainty surrounding Benjamin’s quality of life and what he would be capable of since his Polymicrogyria was described as severe. We were bombarded with doctors appointments and researching therapies that would benefit Benjamin.

Together, my husband and I decided that it was in Benjamin’s best interest that I primarily stay home with him in order to help him reach his full potential rather than working full time as I did previously as a critical care nurse.

In the past two years Benjamin has undergone serial casting of his legs and feet over 4 months to bring them into the correct position.

He has had two Achilles’ tendon lengthening surgeries to help with his foot alignment. He started receiving early intervention and outpatient therapy at 3 months old which includes Physical, Occupational, Speech, Feeding and Aquatic Therapy 5 days per week either at our home or Good Shepherd Rehabilitation in Allentown PA which is 90 miles round trip. When Benjamin doesn’t have a licensed professional he receives focused therapy through play by my husband and I at all times based on what we have learned along the way through our journey. Everything we do with him is focused on him having the best outcomes.

In April of 2019, at 6 months old Benjamin had bilateral hip surgery at DuPont - Nemours Children’s Hospital in Delaware to properly align his hips. He spent the next 6 weeks in a body cast that extended from his chest to hips and both legs with just a small opening to accommodate diaper changes.

Benjamin continues to wear braces on his legs and feet in order to stand. We have made

countless trips to Nemours Children’s Hospital in Delaware for his orthopedic needs as well as to CHOP to follow up with thoracic surgery and neurology.

Our lives are far from normal and it’s something nobody ever expects when you become pregnant with your first child.

Benjamin is our miracle baby and he continues to beat the odds. While his milestones are different than a typical 2 year old watching him achieve new skills is even more of a celebration. As of now he is unable to walk, he struggles with eating more than puréed food and he is nonverbal. He does sign language and knows over 50 words. He scoots and crawls and rolls all over the house and his personality is bigger than the world.

Benjamins development is not typical of his diagnosis. As a matter of fact, on more than one occasion, a doctor or therapist double checked to be sure they had the right patients chart after meeting him because he is exceeding what you might think is possible based on his brain MRI report.

Leaving no stone unturned we researched and came across NAPA, an intensive therapy program in Boston, Massachusetts. It is an application process and Benjamin was accepted into 3-3 week sessions in 2022.

This highly competitive and world renowned center is known for their state of the art equipment and world class therapists.

I will be relocating with Benjamin for a total of 9 weeks for 3 sessions, at which time he will receive therapies for 3 hours a day 5 days per week. While our insurance will cover the medical costs for therapy our out of pocket expenses for travel and housing will exceed 10,000.00 for the three sessions. Thank you all in advance for your continued prayers and support!

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