Seven-month-old Casen Buswell was born with a deadly tissue hardening condition that is so rare that only 14 people in the world have ever been diagnosed with it.
Casen's condition is so serious that his mother, Jenna Buswell, worries about hugging him.
He suffers from Glomuvenous malformations plaque type that causes his blood vessels, skin and muscles to harden, and it will only get worse as he gets older. Casen's condition is caused by a missing glomulin gene left, and if left untreated, it can eventually lead to heart failure.
"It's progressive, so once the skin starts to harden and thicken it becomes extremely painful," Jenna, a mother of two, told ABC News. "Right now, he is so, so little that we're noticing that to touch there are areas that are sensitive so we have to be careful about how we place him."
Jenna says that she can't even hug her son because she fears that the contact may aggravate his condition and already sensitive skin. When Casen was born his tiny body was covered in lesions and it wasn't until after his family went to see a geneticist nine weeks later that they discovered what was wrong with him.
"The geneticist pieced it together and on a whim notified a few other doctors in the U.S. ... and then at that point notified the husband and wife doctor team in Belgium, who identified the gene Casen is missing," Jenna said.
Dr. Miikka Vikkula and his wife, Dr. Laurence Boon, who were both based in Belgium, are the only doctors in the world who have established treatment for the condition, Jenna, who lives in Puyallup, Washington, said. Casen will need to undergo monthly laser treatment until the age of three to prevent his blood vessels from hardening and to give him a chance at living a normal life.
Casen's family has had to raise thousands of dollars through fundraisers to help cover the estimated hundreds of thousands of dollars in medical bills and flights to Belgium for his treatment.
"My hope is he is able to do all the things little boys should do. Run around, ride his bike, play with his sister and grow up and live a fairly normal life," Jenna said.
Published by Medicaldaily.com