Sunday, February 26, 2012


It's Sunday afternoon, and Hank has been making me laugh all day. I love the weekends with these kids. Life seems to be so easy and carefree when we are living in the moment!

Hank and his siblings Christmas 2011
2012 is well under way and time seems to be accelerating! So much has been going on, as with any busy family...but my involvement with Parry Romberg Syndrome continues to be a daily presence in my life.
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 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.

Although Hank doesn't want to look back...he does want to help others. He has no problem talking to people about his PRS. We have been fortunate to be able to connect with other families with PRS and Hank willingly takes part. In November, I was contacted by a man who lives just two hours away. He was coming from his 5 year old son's appointment, where he had been diagnosed with Parry Romberg Syndrome. He was overcome with grief with the knowledge that the doctors they met with hadn't seen a case of PRS in 25 years. Feeling lost and needing to connect with someone who understood, I am happy to report that they found Hank and I! We talked for quite awhile and his wife was able to conference with us as well. I shared as much information as I could with them and listened to their son's story. I recounted Hank's story and surgeries...which are always emotional for me...and we shed tears together. I told them that since they lived so close, that we should meet when they are ready. I wanted them to see Hank and see how well he is have hope that there is "the other side" of all this.

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 much joy and happiness in every day and laughter too!

We are so grateful for all that has been done for Hank...from his surgeries, to the support of other mothers of children with PRS, from friends and family and strangers too! This is defintitely not the life I would have chosen for my child...but it is the life we were handed and we embrace it willingly (what other choice do we have, right?)...being able to raise awareness in hopes of a cure...being the moral support for those going through it...and referring people to Hank's brilliant surgeon...

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!

This year, we want to help raise awareness for rare diseases...and call attention to the fact that much research is needed for treatment. Please join our family and friends in supporting Hank  by wearing GREEN on Wednesday February 29th. Green is Hank's favorite color and he would love to know that there is a sea of green out there, just for him! "Alone we are rare. Together we are strong."

1 comment:

  1. Terri, You are right it's the best thing to feel you are not alone in all of this. You are a continuing encouragement to all of us. Hank is such a trooper. I understand where he's coming from, surgery is such a hard thing to go through at any age. It took Kealy a long time to get to that stage.
    You're the best!
    love ya Terry