Charlene hosted a VBF Awareness restaurant night at Slim Chickens in TN for our VBF Month of Awareness in May in honor of her son, William, who has a Port Wine Stain.
“William’s PWS is on the left side of his face – on his scalp, forehead, eye, side of his nose, cheek, and a little bit on his lip. When he was born, the pediatrician who came into the room after he was born told us what his PWS was and told us he had an extremely high chance of having Sturge-Weber syndrome due to the location. He scared the heck out of my husband and I saying he could have physical and mental disabilities,possible seizures, and glaucoma. I have no real medical experience and was very scared.I have researched all I can about PWS’s since then and have learned so much. William has born in October 2016. In January 2017, I changed my major from education to nursing and went back to school. I knew I needed to be more educated and needed to educate others as well. This year I got accepted to nursing school and can’t wait; I start this August.William has had 6 PDL treatments for far. We see Dr. Waner in Manhattan. We have been blessed with great insurance and we have family in Brooklyn that we stay with when we come. William’s PWS has lightened a lot since birth and he is an extremely smart and healthy little boy. He has gotten a great report every time we see the opthomologist and our pediatrician.At 2 years old, he knows all of his colors in English and Spanish, along with counting to 20 in English and Spanish, and almost the whole alphabet and letter sounds. He has such an inquisitive mind, he wants to know why things are the way they are. The ‘why?” stage is driving me a bit crazy right now but we’ll get through it.I look back at how scared we were when he was born and I just couldn’t be happier that thankfully none of those fears have come true. Unfortunately though, like many others we get so many stupid and rude comments from strangers and it seems as though the older he gets the more questions there are. It has really pushed me to be more proactive about awareness. I can’t thank you enough for your help and support on helping me accomplish that goal. Also, thank you for the VBF pin that you sent in your last package. I plan to pin it to my white nursing coat and spread even more awareness within the hospitals I do clinicals in. This month has been a fun month of awareness and I hope to continue this in the future.”
“We had such a great fundraiser! My son handed out stickers, books, and tattoos to all the families with kids that we saw. We actually spoke to 4 families that just happened to be there that night who are affected by hemangiomas and had no idea there was a such thing as the VBF. To introduce them to that was the highlight of my night. It was such a great experience and definitely plan to do it again.”
Charlene and her crew raised $155 from her restaurant fundraiser at Slim Chickens, and $275 in donations on Facebook! Charlene also has plans for a basket raffle in June to keep the awareness momentum going.