A Sturge-Weber mini warrior!

The story of Kingsley

My 2 year old little man Kingsley, is the definition of a Sturge-Weber warrior! Born with a large Port-wine Stain Birthmark across half of his face, we were told there was a high chance he would also have Sturge-Weber Syndrome, a rare neurological disorder, that affects 1 in 50,000 babies and can cause epilepsy, glaucoma and a list of health complications. At just 4 months old, after a MRI was completed, we were told of the terrifying diagnosis of SWS and it was one of the hardest things to comprehend as a parent.

We were fearful of the future to come, we were unsure and scare off the unknowns. Unfortunately only 1 out of 3 SWS babies won’t develop seizures, Kingsley was the 2 out of 3 that did. His seizures started hard and fast, resulting with him being in hospital for 16 days, with ongoing uncontrollable seizures. We almost lost him multiple times but he fought through it and come out strong!

Although we ended up in hospital 13 times after that and he has had over 100 seizures in his short 2 years, he has proven time and time again just how resilient he is! Even after losing a lot of his right side strength, he continued to push through and began walking at 2 years old! He has had over 3 eye surgeries for glaucoma, 5 laser treatments for his PWS and countless appointments with doctors and therapists, yet he remains a beautifully happy little boy! His seizures are finally starting slow, which is an amazing break for him.

He has taught us to appreciate life and never take anything for granted! We make the most out of every family moment we have and love making memories together with his sister also.

Little warrior