Faith for Fallon Benefit Fund
2019 Update: Heaven gained another angel on March 21, 2019 as Fallon lost her 4+ year battle with SIFD. Thank you all for the prayers, the support, and the love you had for this little girl. She’s not RIP, she’s now RAP -- Running and Playing.
Fallon's Obituary: http://mossfuneralhome.com/obituaries/fallon-g-schlautman/
Fallon's Fight Song: https://www.youtube.com/watch?v=7n0bNMExJcY
2017 Make-A-Wish: https://www.youtube.com/watch?v=68yOqO5BW48
Original February 2015 Post:
My niece/godchild, Fallon, needs a bone marrow transplant in hopes of curing the anemia and immunodeficiency that has plagued her entire life. Prior to the transplant, Fallon will undergo chemotherapy to wipe out her immune system so a new one can take over. We continue to hope and pray all symptoms will respond to the transplant.
A little background to get to where we are today....
On Christmas 2013, Kevin (my brother) and Katie (my sister-in-law) excitedly wrapped a big box of balloons to announce the gender of their first baby - pink or blue? As they opened the box, we held our breath in anticipation. PINK!!! A baby girl was on her way.
In January 2013, Katie went to the doctor for a routine ultrasound. To this point, her pregnancy had been without complication, so the news came as a shock. The baby had hydrops fetalis (fluid on the abdomen). A more extensive ultrasound was scheduled for later that week to determine the cause and path forward.
At the follow up ultrasound, it was determined the baby had severe anemia. Initially, doctors thought a virus was to blame, and a single blood transfusion would fix the issue. Katie went to St. Mary's in St. Louis for the transfusion and was sent home to rest.
During a follow up visit, the doctor found the baby's condition did not improve. The baby was again severely anemic. Kevin and Katie were devastated and left without answers. During the remainder of Katie's pregnancy, the baby was monitored every few days and would go on to receive 4 in utero transfusions. All the while, no answers were uncovered.
The doctors decided to induce 4 weeks early hoping to find the root cause of the chronic anemia. Fallon made her grand entrance into the world on May 21, 2014. She spent 11 days in the NICU due to a collapsed lung from early induction (unrelated to the anemia) and feeding issues. The lung healed, and she started eating, so Kevin, Katie, and Fallon went home with hopes of putting the anemia behind them.
Fallon was monitored closely through weekly blood tests, and unfortunately, her anemia returned. In addition to the anemia, Fallon began to have GI problems. She refused bottles and had to undergo surgery for a GI button because she was not gaining weight.
Over the course of the last year, Fallon has received 20+ blood transfusions and has spent more than 5+ months in the hospital. She continued to have the anemia, poor feeding, GI issues, and high fevers without explanation.
On January 30, 2015, Kevin and Katie received the official diagnosis - SIFD Syndrome. SIFD syndrome is a genetic disorder that has been diagnosed less than 15 times worldwide. It is characterized by sideroblastic anemia, immunodeficiency, febrile episodes, and development delay.
Fallon's treatment has required Katie to quit her job to take care of Fallon full time. In addition, Fallon and her family will also have to find alternate living arrangements within 15 minutes of the hospital for up to a year post-transplant. All funds raised will be used to support Fallon in her medical journey.
For more information on SIFD, please read here:
http://www.bloodjournal.org/content/122/1/112?sso-checked=true
Facebook page: www.facebook.com/faithforfallon
Family and friends also organized a formal benefit for Fallon (see www.faithforfallon.org for details), and donations can also be mailed directly to:
Faith for Fallon Benefit Fund
Germantown Trust & Savings Bank
P.O. Box 246
601 Main Street
Germantown, IL 62245
Thanks for the continued prayers and support.
Proud Uncle/Godparent,
Chris Schlautman
