Isn't she sweet!
Well, my adorable little girl officially has been diagnosed with Basal Cell Carcinoma Nevus Syndrome (BCCNS), also called Gorlin Sydrome. It's not life-threatening, but it is life-changing. There's a mutation in her tumor-suppressing gene, so she's very susceptible to basal cell skin cancer, and 90% of Gorlin patients will develop jaw cysts, among other things. So, we won't be out in the sun from 10 a.m. to 4 p.m. Doesn't that seem insane?! It does to me. But that's our life now, and it could always be worse, right? If you're interested in learning more about this rare genetic condition, you can click the link in the first sentence. It's strange...
my head was prepared for the news, but my heart just wasn't.
I'm still processing everything.
Within the first three hours of finding out, we already had appointments set up for the dermatologist, cardiologist, dentist, and we're waiting to hear about her MRI appointment. Gorlin Syndrome can affect brain development, and the MRI will let us know if something is different; this may shed some light on her developmental delay.
But I'm still processing everything.
One minute I'm fine. The next I'm a basket case. Sigh...
I know that God has a plan, and that He will use this for His glory. But I just have to let it work out in my heart for a while.
Since Gorlin is a very rare condition, I've decided to spend a little time posting about it as we start this new journey. Hopefully we can help, encourage, and connect with other Gorlin families.
I want to thank you all for your prayers, encouragement, phone calls, and emails. They were and are appreciated, more than you know, friends. More than you know. And we'd still love your prayers as we continue to process, adjust, and find our new normal.
God is good. ALL the time.