puzzle man finn

T-SHIRTS FOR SALE

We are printing a second run of the t-shirts! Please let me know if you would like to purchase one either on email or in the comment box on the blog. You can pay via paypal or by check. Thanks so much. We are thrilled that so many people have shown an interest in the t-shirt.

                                           Sean Gilbert, Cameron Linton + Kevin Miller

Thank You for Making the Benefit a Success!

Bridget and I would like to thank EVERYONE who contributed in so many different ways to making the benefit an absolute success.

Over 200 people attended the silent auction and concert at Gibson Guitar Room.  Over sixty items were donated to the silent auction.  And over 40 golfers played in the event on Saturday at Dubsdread.

It's impossible to briefly describe everything everyone did behind the scenes. But, I will try.  Caitlin Barry Van Voorhis, who owns Finnhenry's, was a superhero. She booked the awesome space at Gibson Guitar Room, donated ALL libations for the bar, and had some of her wonderful bartenders from Finnhenry's work the event (thank you to Larissa + Chad). The event would not, could not have happened without the support and kindness of Caitlin.

Steven Foxbury and his band, the Battle Sigh, put on an incredible show, playing a mix of fan favorites and new releases that were outstanding.  We can't wait for the new album to be released.  We are all so incredibly to lucky to know and love Steve---a good soul with an incredible gift that brings people together, giving us music and lyrics that make life more special and meaningful.

Kim Fox and Tom Macaluso both created original works of art to help publicize and remember the events.  Kim produced the jellyfish design that graced t-shirts and posters.  The t-shirts were so popular, we've been asked to keep selling them on this blog and have found it necessary to do a second run.  The posters are part of a numbered series and there are some still available (please email Bridget if you are interested hellobridget@gmail.com).  Tom made the poster announcing the golf event and it was absolutely perfect for the event.

Kevin Miller is the man to thank for planning the golf event at Dubsdread from start to finish. It is no small task to get a group of 40 people together at 8:00 a.m. on a Saturday morning the night after a great concert.

Meredith Miller Wilcke helped by photographing Finn and producing a slideshow that incorporates video and ingenious transitions, allowing family and friends see and celebrate our son.

John Nico worked tirelessly to help plan and coordinate the silent auction. We could not have done it without John's help!

So many people and businesses (listed to the left) donated to the silent auction.

So many people also helped at the event itself: helping at the door, helping at the silent auction, helping at the booth for posters and t-shirts, helping at the bar, helping set up, etc. And everyone helped, just by being there and we are truly grateful.

Contributions continue to come in through the mail, and through paypal on this blog, from people who could not attend but want to help.

It is humbling to benefit from such a great outpouring of support.

Financially, the benefit has been a success.  To date over $15,000 has been raised.  But, more important to Bridget and I, emotionally, the benefit tells us that we are not fighting Diamond Blackfan Anemia alone.

Hundreds of people, friends and family, are pulling for us, praying for us, and selflessly giving in support of our son, Finn Gunderson, a blessed, beautiful boy who is still too young to even know he has DBA, but who will never have reason to doubt whether he is special.

Thank you, everyone.  We are truly grateful and are blessed by your support.

Pictures from the event can be seen here.

Finn's Jellyfish

One of Finn's famous jellyfish. Underwater sea creatures are all the rage in our house.

Benefit Concert + Silent Auction

We are now counting down the days! Please join us on Friday, September 10 for the Finn Gunderson Diamond Blackfan Anemia Benefit Concert + Silent Auction at Gibson Guitar Room in downtown Orlando. Doors open at 6p and the silent auction runs from 6-8:30p. The uber-talented Steven Foxbury and his band, The Battle Sigh, will perform following the auction. Cash bar provided by FINNHENRY'S aka, the marvelous, Caitlin Van Voorhis. The beautiful show poster was designed by Kim Fox. Finn loves jellyfish and she did an amazing job on the poster. Thank you to everyone who is helping make it all happen! We can't wait to see you all.

Diamond Blackfan Anemia 101

I thought I would share the basics of Diamond Blackfan Anemia to help people better understand this rare and unique disorder. Diamond Blackfan Anemia (DBA) is a bone marrow failure disorder that inhibits red blood cell production. Finn does not have the ability to produce red blood cells on his own so he depends on blood transfusions every 2-3 weeks to survive. After a blood transfusion, Finn's hemoglobin rises to a normal level and immediately begins to slowly drop until his next blood transfusion. The low hemoglobin affects his energy level, pallor and overall health.

Finn continues to do well on transfusions, but is dealing with severe iron overload as a result of receiving over 50 transfusions and counting. Iron overload can be dangerous if not treated because excess iron primarily builds up in the liver and heart and can cause serious liver and cardiac problems. Because the body does not expel excess iron on its own, chelation therapy is required to help Finn rid his body of excess iron. Every night while Finn sleeps, he receives desferal (chelating agent) through a subcutaneous needle connected to an infusion pump. He seems to be responding to the nightly infusions as we just learned that his ferritin (iron indicator) levels significantly dropped for the first time in over a year. To learn more about DBA, please check out the DBA Foundation online. (There is a baby picture of Finn on the "For Families" page.)

Golf Outing at Dubsdread

The golf outing is set for Saturday, September 11 at Dubsdread Golf Course in Orlando. Please contact Kevin Miller (kmiller1028@cfl.rr.com or 407.252.7402) for details.

Save the Date for upcoming Benefit!

Please save the date the Finn Gunderson Diamond-Blackfan Anemia Benefit on September 10 + 11, 2010. Events will include a concert featuring Steven Foxbury + The Battle Sigh (9/10), a silent auction (9/10), and a golf outing at Dubsdread Golf Course (9/11).

We hope to see you in September!

Give Blood!

Finn's life depends on the kindness of strangers who donate blood.

He gets red blood cell transfusions every two to three weeks.

It's a day-long process. Half the day he is connected to an IV.

For whatever inconvenience and pain there is, it is worth it--it keeps him alive.

Before a transfusion, when he is low on red blood cells, Finn gets pale and lethargic.

Immediately afterwards, his skin has a new pink hue. The red blood cells literally make him redder. His energy levels are like those of a typical two and a half year old the day after a transfusion, after a good night's sleep.

Here is a link to Florida Blood Services that can help you find out about blood drives near you.
www.fbsblood.org/html/donate/drives.aspx

Rock and Roll

King Ham

Yes, Finn can ham it up.

More Cowbell Please

This photo was taken at Finn's second Tampa Bay Rays game.

After downing some cotton candy, the cowbell got little rest.

The Rays won that night, but, most importantly, the cotton candy was very, very good.

Finn digs bugs

Finn digs bugs.

He enjoys watching them and holding them.

He likes picking them up and, a little too much, he likes bringing them into the house.