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.