In January, 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 9 months, Fallon has received 18 blood transfusions and has spent more than 4 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 will undergo a bone marrow transplant in a couple months in hopes of curing the anemia and immunodeficiency.  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.

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.

Tomorrow is a very special day. With the help of their friends and family, a benefit will be held at Bartelso, IL park from 2pm-12am for Fallon and her parents. Oral and Silent Auctions will take place. Anna and Elsa will be there for the kids and they will have plenty of other family friendly activities to keep you and your kids happy. All funds raised will be used to support Fallon in her medical journey.

I can’t help but be emotional when thinking of this session and how important this was to Katie. We read articles online and watch the news and we hear about all the sad things in the world – sickness, cancer, rare health diagnosis – but it isn’t until you actually know someone with something so rare that only 15 people in the world have been diagnosed! Being with them for several sessions I’ve heard the phone calls from the Doctors offices that must be taken, you see the medical attention she needs, you feel the love and hope and sadness all at the same time. Yeah, that’s when it really hits home. That’s when you look at what you think are bad days, and you realize that life is short and we need to cherish each and every day.

I’ll be praying for the family as they embark on another journey. One that we pray is the cure and answer to a happy life for Fallon, Katie, Kevin and their families.

We love you sweet baby girl! Stay strong!!!

XOXO