Hello, And Good Afternoon. This Is From A Friend Of

Hello, and good afternoon. This is from a friend of mine that I went to school with. Everyone seems to be at a loss. Do you have any thoughts on this??
This is my son,Collin. He's 5 years old and a pretty swell kid! He likes to find Waldo,ride his scooter and play with his big sisters. Collin was born with a "vein anomaly." His veins are visible and bulging from his body. At 9 months old he had a MRI that showed his veins were growing wild throughout his body "like a bowl of spaghetti." Those are the words on his MRI results. His left arm and hand often hurt. Especially on hot days when he bulges out more. He has a big purple bump on his arm (see pic) that he lovingly refers to as his "blueberry." As Collin grows older,he turns more purple with more veins becoming visible. He has yearly visits to Doernbecher Children's Hospital where he is seen by a large team of doctors. Unfortunately, they know nothing about his condition.They have no name for it and don't know how to help him. I've looked everywhere and am as lost as his doctors. Now I need your help. Please share this and ask your friends to share. I can't help but think there is someone else that has the same condition. Can he really be the only person on the planet like this? Someone must know something! From my whole family...thank you so much for sharing!