Quick Update on Luke

Due to the recent passing of Luke's older brother, LCpl Noah Pier - Marjah, Afghanistan, we have not been able to update you on Luke's progress. Please know that we will be back online soon with some exciting fundraisers and events to share with you. As always, thank you so much for your support - especially during this difficult time.

We do have a quick update to share at this time, though. Luke is being evaluated by the Shriner's Hospital on March 18th. We are uncertain what the future holds because Shriners Hospitals for Children initially denied Luke. We are excited that they have reconsidered due to the slow growth of his aneurysm. March 18th is the first step to begin the evaluation process.

We have a few prayer requests:

1. Please pray that the Shriner's Hospital will agree to perform Luke's Nuss procedure.


2. Please pray for the Pier family as we grieve the loss of Noah, our hero.


3. Please pray that 2010 will be a great year for The Luke Pier Foundation as we continue our mission: "to provide funding for life-saving scientific research focusing on, but not limited to, connective tissue disorders. We are also committed to help provide funding and encouragement to individuals for medical treatment they may not otherwise receive due to limited resources or lack of health insurance."

We will update you as soon as we know more! Thank you for your support!

In His Own Words

Luke wanted to talk about his imminent surgery and tell you what it's like to be in his shoes. We sat down and talked with him earlier this week, & this is what he had to say.

“At first I wanted the surgery for my looks, but now I want it because it feels like I am closing up, like I’m breathing through a tube that’s shrinking. I watch everyone run around and I see how they last longer with their breathing. I have to stop before them and catch up with my breathing. I feel frustrated and less than I can be. I have more energy but I can’t go further, I have limits because I have to catch up with my breathing. I don’t like having limits.”

When asked what his sunken chest feels like, Luke responded, “It hurts! I thought at first that it hurt everyone to run. When people finish running they can take a deep breath. I can’t. It’s like I can’t take enough of a deep breath, but instead I cough it out. Every time I try to take a deep breath, after I’m running, I go to breathe air into my lungs but my lungs are tightening. It blows air out really quickly, and I have to sit down to catch up. Now even when I do little things my breathing feels like my chest is closing in and my lungs are being stopped by my chest.

It’s like my lungs are being pushed, like you put a balloon in a jar and when you blow it up to a certain point you can not blow it up any more until you let the air out and blow again. My chest is the jar and my lungs are the balloon. Sometimes I’m not able to take a deep breath. It feels like I am slowly dying, something slowly is happening and I am getting worse and worse. I know I am not going to die, but that’s what it feels like sometimes.

I can do more, but my chest is holding me back. I feel like I’m less of being myself - that I can go further. I try to make my breathing not noticeable. I try to hide it. I don’t want people to think of me as weak.

I wish people could feel like I do so they would understand. I have so much energy inside of me but my breathing is holding me back. I am never able to go as far as I know I can – my breathing stops me, and I feel like I will bust.”

In his own words.

From The Beginning

Hello All!

My name is Vikki Pier and I am Luke’s mother. I have decided to try my hand at blogging in order to keep you updated with Luke’s progress, needs, and who knows - this may be therapeutic!

Luke is the 7th of my 10 children. He has always been tall, thin, energetic, tender hearted, mechanically minded and extremely flexible. An orthopedic doctor Luke was once seeing, because of pain in his joints and dislocations, called him “rubber band man”.

In February 2007 I took Luke to a cardiologist because he was complaining of heart pain. The pain was so great at times it would stop him in his tracks. Even with this pain I never dreamed Luke had any problem with his heart. Instead I believed the cardiologist would refer us to a doctor that would correct his sunken chest. During this visit we learned Luke had an enlarged aortic root and a possible connective tissue disorder.

After my initial shock and fear I began researching in order to make sure Luke received the best care possible. I discovered that one of the best alternatives for Luke to have, when surgery was needed, was the valve sparing procedure. This operation is not done at very many hospitals and the few I found would not accept us because of insurance reasons. Johns Hopkins Hospital in Baltimore, MD did welcome us into their genetic clinic and Luke has been seen there since 2007.

Luke’s aneurysm, at this time, is “slow growing”. As of his last visit in June 2009 he has been referred to an orthopedic doctor at Johns Hopkins in order to have surgery on his chest. The doctor said Luke needs this surgery because the progression of his chest deformity has been great and it is now interfering with his breathing. The doctor said it would be best to perform it now because of his age. He would perform the Nuss Procedure costing approximately $70,000. This figure includes the doctor and hospital fee.

Here I go again – I am not in shock and I am not fearful – overwhelmed and desperate is a better description. I am overwhelmed at the prospect of raising $70,000.00 and desperate to do just that. We (The Luke Pier Foundation) must raise this money! Luke does not have a choice; this procedure is not for cosmetic purposes. I contacted the Shriners Hospitals for Children and they have denied Luke because of his aneurysm and there is no insurance to pay for this.

The doctor and hospital at Johns Hopkins will work with us but we must raise the money for Luke’s surgery. Please pray for The Luke Pier Foundation as we brain storm our next fundraiser. Yes, I am overwhelmed, but I will not continue in that state because Luke needs my help. I have chosen to believe that the funds will be raised and Luke will receive this needed surgery.

• Proverbs 3:5 & 6 Trust in the Lord with all your heart; and lean not unto thine own understanding. In all thy ways acknowledge Him, and He shall direct thy paths.
• Jeremiah 32:27 Behold, I am the Lord, the God of all flesh: is there any thing too hard for me?

That should get you caught up on where we are today. I will continue blogging as we navigate through this journey. Feel free to post your questions and I will try to answer them in future posts.

Vikki

A New Approach

We at The Luke Pier Foundation have decided to take a new approach with our blog. Our first "new" post will be later this week, so check back soon! You will hear from us much more often. The focus of the blog will be less about the fundraisers (We'll still talk about those, though! It's why we're here!) and more about the journey.

We'll ask for your feedback along the way, so be ready to ask questions and participate in the conversation.

Thank you, as always, for your support these last three years (can you believe it's been three years already?). And we look forward to sharing the journey with you even more in 2010.

People Are Talking!

We are excited about our 3rd Annual Softball tournament tomorrow, & we're even more excited to read that people are talking about us!

SJB Weddings & Events has been a sponsor of The Luke Pier Foundation since our inception, & they're still talking about us after all this time! Click here to read their great post about us!

We're also being talked about on our new Twitter account. If you are on Twitter, feel free to follow us! Our ID is @TLPF, & we post updates about our fundraisers as well as important info on the latest news & research of connective tissue disorders.

Thanks again, SJB Weddings & Events, for your continued support!

Luke's Next Appointment

Many of you readers like to follow Luke's progress & hear the latest news on his condition, so we wanted to let you know when his next appointment at Johns Hopkins is scheduled for.

Luke will have another echocardiogram on June 23, 2009, to monitor the aneurysm. Immediately following that appointment, he will have a routine exam at the genetics clinic as well.

Please pray for the doctors' wisdom as well as for Luke's condition.

We also wanted to mention that we have our 3rd annual softball tournament coming up on May 2, 2009! We are really excited about this event and will post more information very soon!

Hitting the airwaves!

We are so excited to announce that WBT, our Official Media Sponsor of the May 3rd softball tournament fundraiser, is now airing 30 second promos about the tournament on their radio station! They are helping us reach so many people with the information about our fundraiser!

We also have some other exciting radio news! A local Charlotte radio DJ, Allen, from Kiss 95.1 is conducting an interview with Luke & the Foundation today! The interview will air on April 20th & 27th from 6am-7am. Kiss 95.1 will air it on one of those dates, & 104.7 will air it on the other Sunday.

It's early for many of you in the Charlotte area, but maybe while you're sipping your coffee you'll remember to tune your radio to 95.1 or 104.7 & listen in!

The interview itself will be approximately 30 minutes long & will give us a chance to discuss the tournament, Luke & the Foundation in length. You don't want to miss it! Allen interviewed us last year & really helped us educate people on why we do what we do! Thanks again, Allen!

Calling all bloggers!

If you have a blog & want to help The Luke Pier Foundation, here's your chance! We have created a widget that you can add to your blog or website to help advertise TLPF! The widget will show your readers snippets of our blog posts & potentially advertise us to many more people!

You can customize the colors to match your current blog layout, so it won't stick out like a sore thumb (would that really be that bad, though?). You can also use this widget to post to social networking sites such as Facebook & Myspace.

Just click the button below to get a Luke Pier Foundation Blog widget of your very own!



As always, thank you for your support!

What We're All About

Hello, Friends!

We thought it would be a good idea to share with you what we are all about.

As you've probably read on our website, Luke's story is an important story to tell. It has been about a year since Luke was first diagnosed with a bulging dilated aortic root (aneurysm at his aorta), & he is still being monitored to find out the cause of the aneurysm.

Luke is currently being treated by the Johns Hopkins Comprehensive Marfan Center in Baltimore, MD. They have a great website with resources about Luke's condition and connective tissue disorders such as the Marfan Syndrome.

Feel free to check out the links below to learn more about why it is so important to us at The Luke Pier Foundation to raise money for research to help prolong Luke's life and the lives of others affected by connective tissue disorders!

• History
• Publications
• Education
• Resources

If you want to do more to help us with our mission, please view our website for ways you can help!