A Young Jedi's Love of Star Wars Helps Him Deal With Saethre-Chotzen Syndrome

 


Marc Jacques, a nine year old boy living in the U.K., is a huge Star Wars fan. Sounds like millions of other kids on the planet, right?

However, Marc suffers from the congenital disorder Saethre-Chotzen Syndrome (aka SCS or acrocephalosyndactyly type 3), which means that when he was born, Marc had no soft spot on his head. This led the front of his face to be flat in appearance and gave him a very high forehead. His head was also flat at the back as well. The condition affects his learning abilities and writing skills and has resulted in frequent headaches. Marc was only about two months old when he was diagnosed with the condition.

So far Marc has had grommets put in his ears, as the shape of his face and head make him get colds more often than normal. The procedure was to aid him in preventing glue ear (where the middle ear fills with fluid not air) and to help with his hearing. He also had a five hour operation when he was two and a half years old called fronto orbital remodeling. This was to help with the appearance of his face and head and to relieve some pressure on his brain.

Unfortunately, Marc’s headaches are once again worsening, and his parents are now waiting to hear from Great Ormond Street Children’s Hospital for their next appointment. The fear is that another operation is in the cards for Marc. But given his condition, Marc’s future looks promising. Of course he will continue to need medical treatment, but Marc is such a positive little boy who enjoys life... largely because of his love of Star Wars.

His favorite character is Darth Vader. According to his mother, he loves all the Star Wars films and repeatedly watches them every night before bed and as soon as he gets up in morning on the weekends. His favorite toy is his lightsaber, and he literally sleeps with it. Marc would prefer to be Jedi than a Sith (as he says Jedi always win), and he wants to be an actor when he grows up as he said he would like to be in a Star Wars film!

One thing is certainly for sure... the Force will be with Marc, always!