You’ve probably never heard of PHACE Syndrome. I hadn’t either until twelve years ago. I’ll never forget the day my sister called to tell me about my infant niece Lena’s PHACE diagnosis. I was standing in the produce section at Stop & Shop, picking up burgers to make for dinner. I remember her telling me about what amounted to a knot of blood vessels in her head, and another in her throat, blocking most of her airway. I stood there and I listened and I just kept asking, “but they can fix it, right?”
Twelve years and multiple medical procedures later, Miss Lena is a happy, well adjusted kid. She takes piano and dance lessons, and loves everything art related. Like me, she loves to write and is a fan of Trixie Belden books. She’s my weekly reminder to keep working on my own book. And she’s a sweet, generous, giving girl. She takes every doctor visit and procedure in stride, with a positive attitude.
I asked Lena to help me out with this post and share a little bit of what her life with PHACE is like and here’s what she had to say:
I have been living with PHACE for basically my whole life so it doesn’t really effect me as much. What I mean by this is that I was diagnosed with PHACE when I was not even one year old so if PHACE effects me, I don’t really realize it. I’m used to doctors appointments and stuff …. It is just normal for me. What PHACE is is basically an acronym for symptoms. you have to have I think at least 3 of the symptoms. Recently I went to a conference where people with PHACE came from all over the place. It was so nice to have people who can relate to me. Like this surgery that I hate, because you have to lay straight for so many hours. So yes there is not a permanent cure for it but I am ok with that because it makes me me. I do though would like to help other people get more knowledge about PHACE.
The PHACE Syndrome Community Friends is an organization that works to promote awareness, share medical information, support research and provide a community for PHACE families. Their annual conference gives Lena a chance to meet other kids with PHACE, and my sister and brother-in-law an opportunity to connect with other PHACE parents.
My large extended family have thrown ourselves into supporting PHACE awareness, and if you follow any of us on Facebook or Instagram, you’ve no doubt seen us use the #showyourphace hashtag this week. Lena and I like to take Snapchat photos each year…here is this year’s:
So what can you do to promote PHACE Syndrome Awareness week? Wear red today for PHACE awareness and #showyourphace with a picture. If you’re inspired by Lena’s story, visit www.phacesyndromecommunity.org to learn more about PHACE or to make a donation.