Iron Horse Community Church Benefit Concert October 2, 2009

A benefit concert for Baby Hadyn - Hot Blues Music by Will Segraves, comedy, motorcycles and free refreshments.

Our Story so far…

Hadyn Allyssa Brake was born on July 28, 2008. We were able to bring her home – for the first time – on August 12, 2008. Baptist Hospital kept her for two weeks and said she was perfectly healthy, but she had Sleep Apnea and that she would grow out of it by the time she was two months old. Five weeks and several trips to the Emergency Room later, we found out she did not have Sleep Apnea, but rather she was diagnosed with Congenital Nephrotic Syndrome, which is a chronic kidney disease. It was September by now. We spent another two weeks at Sacred Heart Hospital then she was "life-flighted" to Birmingham's Children’s Hospital. The doctors there said that she would need to have both of her kidneys removed – probably by the time she was three months old and that she would need Albumin infusions every day until then. However, we were able to take her home for a month or so, because she was doing so well. But, in November, her Nephrologist (in Pensacola) sent us back to Birmingham because she started retaining too much fluid. When we got there she weighed 12lb. 90z. It took 3 weeks to get all the excess fluid off. Her weight was actually 9lb. 7oz! We spent the rest of November and all of December trying to get her well enough to come home. They performed two surgeries that month - one for her dialysis catheter and the other to insert a feeding tube. The doctors decided they wanted to her to keep her kidneys for as long as possible, since she was doing better than the four other babies with the same disease. But, just before we were ready to go home, in the middle of January, they changed their minds and started preparing her for the removal of her kidneys. Hadyn turned six months old on January 28 and the surgery to remove her kidneys was done on February 4. It took about 7 hours and everything went well. It was discovered during the surgery that she had a duel kidney, which is like having two kidneys in one. We spent the rest of February in Special Care Recovery and finally after four long months in the hospital, we were sent home! Now Hadyn is 9 months old. We have been home on Dialysis for 3 months and we are hoping that by this August she will be ready to start getting things done for her transplant. We greatly appreciate anything you can do to help!
Amanda, Brandon, DeLana & Hadyn
Free event, music, comedy, motorcycles, hot dogs...Donations are appreciated. Thank You!