The Tribune

RUNNERS in the Nassau Bahamas Marathon this upcoming January will probably see an uncommon sight as two local youths plan to participate in the race.

The catch: the 16- and 13-year-old siblings suffer from Charcot Marie Tooth Syndrome, a rare neuromuscular disease that causes severe atrophy of the muscles.

The degenerative disease has left both Tzvi and Racheli Herzfeld reliant on wheelchairs.

“It hasn’t been easy”, said Racheli, “before my recent surgery I could walk on my own and had more stamina, but recuperating has been hard.”

The siblings, from Teaneck NJ, plan to compete in a half marathon this upcoming January with assistance from Kids of Courage, a volunteer organisation that gives year round support to children living with serious and terminal illness.

The New York-based non-profit specialises in medically supervised travel, and makes dream trips possible for children who would otherwise be confined to the hospital or to their home care routine.

“Because of our expertise in travelling with serious illness, it’s essentially easier for us to travel with large groups of medically challenged individuals than it is for most parents to travel with just one,” said Dr Stuart Ditchek, the program’s medical director.

The Herzfeld’s first joined Kids of Courage on its 2010 flagship summer trip to San Francisco. “I feel so comfortable around this group” said Racheli.

“I got to go adaptive horseback riding”, Tzvi added. “I never thought I would be able to ride a horse again”.

They’ve also been taken adaptive skiing, swimming with dolphins, and to Los Angeles and Orlando, all on the generosity of the organisation.

Kids of Courage provides life-altering trips to its hundreds of participants at absolutely no cost to the children or their families.

Last summer, more than 150 seriously and terminally ill children from 14 states and four countries went to Orlando for nine days.

The group was accompanied by 350 volunteers, including a medical volunteer for each child. Around 1,200 doses of medication was administered per day on the road, which according to Kids of Courage is more than an average-sized children’s hospital.

Kids of Courage will be hosting a charity marathon weekend in the Bahamas this January for its supporters who are running to raise crucial funds for the organisation.

When the Herzfelds found out they would have the chance to help give back to Kids of Courage, they jumped to sign up for the race.

“As someone who is physically disabled, it isn’t always easy to help others” Racheli lamented. “Now I have a chance to help in a way that is possible”.

This altruistic mentality isn’t out of the place for the Herzfelds.

“Kids of Courage is my extended family,” said Tzvi, “I would do anything to help my brothers and sisters. It also adds to the adventure, I never thought I would go on an aeroplane, let alone go to the Bahamas with my friends to help them out.”

Volunteers from the organisation plan to push the siblings in adaptive chairs, but they’re determined to walk across the finish line on their own. “I know it’ll be physically challenging, but I’m ready”, said Tzvi.

“I’m just going to smile real big for the photo finish”, said Racheli.