Brothers with Rare Genetic Aging Disease Get to Meet Philadelphia Eagles

Source: Yahoo Sports

Sitting in the living room of their home in Pennsylvania, two brothers — Nathan Falcone in a Phliadelphia Eagles Carson Wentz jersey, Bennett in a LeSean McCoy — eagerly show off their white leather Philadelphia Eagles footballs, adorned with signatures of about a couple dozen or so of their heroes.

Both brothers have a rare form of the already rare condition progeria. In layman’s terms, progeria is a genetic disorder that causes children to age rapidly. It causes them to have thin skin, protruding veins, hair loss and joint soreness. They have a form called Mandibuloacral Dysplasia (MAD), which is extremely rare: of fewer than 1,000 kids worldwide suffering from progeria, the Falcone brothers represent two of just six known cases of MAD in the entire world.

The good news is, their symptoms are less pronounced than kids with the classic form of the condition. They’ve been involved in clinical trials for about 8½ years, starting after they were diagnosed, but there’s not much with which to compare the results. The less-pronounced symptoms seem to be a good sign, but they just don’t know. The lifespan of children with classic progeria is around age 13. Their mom Phyllis admits that they almost try to live in denial or at least live their lives as normally as possible.

They are huge Philadelphia sports fans (their dad Mark jokes they didn’t have a choice in the matter). During Eagles games, Bennett is sometimes quieter though he’s the more outgoing of the two. On the other hand, Nathan’s temper shows itself (Mark jokes he doesn’t know where that comes from).
Another thing the brothers enjoy is watching YouTube videos of other people playing video games. Their channel has just over 1000 subscribers, and now is very likely to keep growing.

Eagles linebacker Kamu Grugier-Hill was shown a video of the brothers with Nathan in an Eagles shirt and the two of them talking about the team. Within two days, Grugier-Hill had Nathan, Bennett, Mark, Phyllis, and 14-year-old adopted sister Libby visiting the Eagles NovaCare facility for a tour which included a private trip through the Eagles’ locker room where they met about 20 players.

Everyone seemed to agree that the highlight of the trip was meeting backup quarterback Nick Foles. Bennett got to show him a homework assignment: write five sentences each containing a contraction. All of Bennett’s sentences were Eagles-related and one of them was, “There’s going to be a parade down Broad Street.”

Most of the kids at school don’t give them any problems. If they do meet a new kid with questions, they handle it as simply as possible: “I just tell them the truth,” Nathan says. “That I have special needs.”

One thing the whole family agreed on was the outcome of Super Bowl 52. Taking down the mighty Patriots was extra sweet because in August, the boys will return to New England Patriots territory for another round of their clinical trial!

Nathan and Bennet with Chris Ulmer (Special Books by Special Kids)
Fighting For Their Future Facebook Page
Nate & Ben Bros YouTube Channel
Learn More About Progeria
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