Faith for Fallon Benefit Fund
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:
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.
Since the last posted update in July, Fallon has continued to have some ups and downs, but she has been able to spend the majority of her time at home with Mom and Dad. She continues to have routine visits to Cardinal Glennon for blood work as well as in house physical therapy visits. She's also been fitted with a pair of glasses to help her vision, but she has not yet received the bone marrow transplant due to the complications from July. As Thanksgiving approaches, we're all very thankful for the tremendous support and prayers throughout Fallon's journey.
Doctors tried taking the intubation tube out, but Fallon proved that she just wasn't ready yet. They had to re-intibate and sedation medications are back on board.
We still don't know the cause as to what triggered her seizures. Everything is coming back negative. Undetected viruses, chemo, or her underlying disease is still what they are considering. All we can say is Fallon has a lot of fight in her and we can't thank God enough. Please continue to keep the Faith for Fallon as the doctors will attempt to again remove the intubation tube sometime during the week of 8/3..
Since Fallon started chemo, her body hasn’t responded too well. She started going downhill Friday night with reoccurring seizures Saturday morning. They were on and off Saturday until 6:30 PM. Then she went into a seizure and hasn't really stopped. Saturday night they incubated her with a breathing tube and ventilator. The seizures continued yesterday, and doctors have given her the maximum amount of several seizure drugs to try to stop it. MRI showed disturbing news of swelling in the brain. As of last night, Fallon was put into an induced coma for an unknown amount of time to stop the seizures. As of right now, bone marrow transplant is out of the picture. All they’re hoping now is to save her life without too much brain damage. I think we need a miracle. Please continue to keep her in your prayers.
Since the update dated June 5th, Fallon contracted a virus in her lungs, which delayed the start of the chemo and bone marrow transplant (BMT). They received test confirmation on Sunday (7/19) that the virus had finally cleared, and Fallon went into the hospital on Tuesday (7/21) for her first chemo treatment. Doctors are planning for 2 weeks of chemo before the BMT, and Fallon will be hospitalized for the next 100 days at a minimum.