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.

Update on Luke

It has been a busy spring and early summer for all of us at The Luke Pier Foundation. We finished the softball tournament in May and are happy to announce that we raised over $2,000.00 for our cause! Thank you to all of our supporters and teams. And a special thank-you to our sponsors, Community One Bank, Piedmont Natural Gas and Boatsman, Gillmore & Associates!

Luke had another appointment at Johns Hopkins a couple of weeks ago. He received good news about the aortic aneurysm (dilated aortic root) - it is still a good size for his body size and age! They want to continue monitoring him, of course, but he is okay for the time being.

Luke will need a different kind of surgery within the next 12 months, though. He will return to Johns Hopkins to undergo the Nuss procedure. Some people who have connective tissue disorders also develop pectus excavatum (or sunken chest). They want to perform the operation on Luke before he gets much older. Because he is still young (he's 15 now), his bones are still pliable and will adapt to the operation much better than if they were to postpone it. We are thrilled that he will have the opportunity to fix his chest and cannot wait to see the results. We will let everyone know more as the surgery gets closer.

We will be working on the plans for our next fundraiser in the coming weeks. If you have any ideas about fundraisers that you think would be successful and draw a crowd, please leave a comment or send an email to info@thelukepierfoundation.org.

As always, thank you for your support!

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!

Your Chance to Make a Difference

We now offer four options for our softball tournament sponsors! If you are interested in sponsoring our 3rd Annual Softball Tournament, please contact us at info@thelukepierfoundation.org. Thank you!

$1,000 Level - Grand Slam Sponsors

• Logo on www.thelukepierfoundation.org


• Link to your website


• Brief paragraph about your business on www.thelukepierfoundation.org


• Top level logo on volunteer t-shirts


• Top level logo on sponsors banner displayed at tournament

$500 Level - Home Run Sponsors

• Logo on www.thelukepierfoundation.org


• Link to your website


• Mid-level logo on volunteer t-shirts


• Mid-level logo on sponsors banner displayed at tournament

$300 Level - Triple Sponsors

• Link to your website on www.thelukepierfoundation.org


• Lower-level logo on volunteer t-shirts

$100 Level - Base Hit Sponsors

• Your company name on www.thelukepierfoundation.org


• Your company name on volunteer t-shirts

Payment Methods

• PayPal *preferred method (Select the 'Donate Now' button below, or on our website, to sponsor the tournament)


• Check


• Money order


• Payment must be received by April 25, 2009

The Softball Tournament is the Foundation’s largest fundraiser each year and is crucial to our operation. We have set an aggressive goal of raising $35,000.00 in 2009. We need your support to reach this goal. Funds raised this year through the tournament will be used for the following:

• Funding for life-saving scientific research focusing on, but not limited to, connective tissue disorders
• Funding to individuals for medical treatment they may not otherwise receive due to limited resources or a lack of health insurance
• Encouragement to individuals with medical needs

Thank you for your support!

Volunteers Needed

We are looking for volunteers for our 3rd Annual Softball Tournament on May 2, 2009. Volunteers are needed to help us:

• Pass out flyers at local ball fields to advertise tournament
• Make phone calls to potential tournament sponsors
• Tournament set-up & tear-down
• Entrance gate (collect entrance fees & direct teams to the check-in tables)
• Food service during tournament
• Track games & report final scores back to main table
• Other tasks as needed

We will work with your availability! Please contact Katti (katti@thelukepierfoundation.org) to sign up!

It's That Time of Year!

Contact us to sign up your team or sponsor this event!

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!

What Is An Aortic Aneurysm Anyway?

So, you have read and heard about Luke & how he was diagnosed with an aortic aneurysm. And you may have even been to one or more of our fundraisers. You may still be wondering, though, "What is an aortic aneurysm anyway?" Well, we're here to help!

As you can imagine, we have done lots of research since Luke's diagnosis, & we have found a great resource that explains what an aortic aneurysm is. As we have stated before, Luke is being treated by Johns Hopkins University Hospital in Baltimore, MD. Their website has so many learning tools to help us understand more about Luke's condition as well as connective tissue disorders, in general.

Here is the definition of an aortic aneurysm, as told by Johns Hopkins*:

"An aortic aneurysm is a weak spot in the wall of the aorta, the primary artery that carries blood from the heart to the head and extremities. There are three common types of aortic aneurysm. Saccular and fusiform aneurysms are balloonlike swellings of the arterial wall that can occur in the portion of the aorta within the chest or just below the kidney in the abdomen. A dissecting aneurysm is a longitudinal, blood-filled split in the lining of the artery, usually occurring in the aortic arch near the heart. As blood is pumped through the aorta, the weak spot in the elastic arterial wall bulges outward.

The risk is that an aneurysm will eventually rupture, with great bleeding internally and complete collapse of circulation. Sudden severe pain, shock, and loss of consciousness usually occur within seconds, and death is imminent in more than 50 percent of cases, even with emergency surgery. Thus, the goal is to detect and treat an aortic aneurysm before it ruptures. Aortic aneurysms generally affect people over 60 and are more common among men."

As evident by the description above, Luke's condition is very rare because he is not over 60 (he was 13 when he was diagnosed!) - yet another reason to donate to The Luke Pier Foundation because so much still needs to be learned about pediatric cases like Luke's!

*Retrieved from http://www.hopkinshospital.org