|Hank and his siblings Christmas 2011|
Hank is doing well. He had some school issues in the fall, which seem to be resolved. He is happy and growing like a weed! He made Honor Roll last term and we had a wonderful Christmas and New Years with family!
I worry about Hank...he doesn't want any more surgeries and at 10 1/2, he voices his opinion. It was almost easier when he was younger...he didn't know what to expect and he didn't really say much about it. But now? Well, he really wants to just move forward and he is not looking back. I hate to tell him that he needs another surgery. I was hoping that he didn't...even though his surgeon, after looking at photos said he would need a procedure this summer...I hoped he was mistaken...
But today...UGH...Today, I saw Hank across the store...and as he walked up to talk to his Dad, I was startled to see that his face has changed a bit. I've been noticing the changes...but they are so subtle, and I see him every day... Sometimes I think he looks perfect....and other times...like today...I just don't know!
Is it because he is growing? Or is it something else...Has the flap "slipped" a little? I do think he has some bone involvement, as his smile is a little more crooked...but I love that smile...! And Hank's eye looks a little droopy...I know it needs work...but do we wait until he goes through puberty or do we address it now? I don't want to wait until it's too late...but how late is too late? So many unanswered questions... That is what happens with a rare disease of unknown origins...unanswered questions...
But even with my worries and concerns...I know, without a doubt, that we chose the right course of treatment for Hank. I can't even imagine what his life would be like right now, if we hadn't done the surgeries. Back when he was first diagnosed, I couldn't even imagine we would ever be where we are now and Hank would be the funny, confident, kind, handsome and energetic boy he is now! Although the surgery is not considered a "cure", it was the only chance we had to stop the progression...and with no other symptoms, things seem to be just as they should be.
The next morning, I saw that an email had come in at an early hour. "Are you available to meet? ...We will come to you." I quickly wrote back, "Of course!" This was a first for us and we were excited by the prospect of meeting someone who lives so close by! By 1:00 we were sitting at my kitchen table. Hank came in to meet them. He patiently let them look at his face. We talked about his surgery and he even graciously showed them the scar on his back. We compared pictures and talked about treatment options. But more than anything, I think we were able to give them some comfort and let them know they are not alone!
This is not an easy path we are on. I try to stay positive and look at how far we've come in all this. I don't dwell on Hank's condition...I know he doesn't! His resolve and strength never cease to amaze me and I try to follow his lead. We are so lucky to have this little family of ours...so much joy and happiness in every day and laughter too!
We have a possible lead on some research starting to isolate the cause of PRS. If it comes to fruition, Hank will be a part of it. I don't want to say too much now...but am keeping my fingers crossed that it will happen! Please cross your fingers, too!
Wednesday, February 29, 2012 is Rare Disease Day. In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. Parry Romberg Syndrome is thought to affect less than 1,000 people in the US. Now that is rare! According to the National Institutes of Health (NIH), there are approximately 6,800 rare diseases...and while each one is rare...together they affect nearly 30 million Americans...or almost 1 in 10 people, 50% of them are children!