Hello, I am doing this fundraiser to help out a good friend and co-worker, Kirsten and her family. They are on a uphill climb to help their newest family member become healthy enough to come home with them.  

  On May 4, 2023, Kirsten and her husband Tony’s daughter, Sedeqe was born.  Her birth was a miracle after many months of a stressful pregnancy.  At 20 weeks in utero, she was diagnosed with a Severe Left Side Congenital Diaphragmatic Hernia.  The organs in her stomach were developing higher up in her chest.  Doctors said there was less than a 5% chance of her surviving at birth, but Kirsten and Tony decided to wait for whatever God’s will was for Sedeqe and their family.   Sedeqe was born on May 4, intubated and put on ECMO within an hour of her birth. 

  The very next day on May 5, KC Childrens Mercy repaired the very little diaphragm she had. She was a fighter and kept defying the odds.  She got off ECMO at 11 days and extubated on day 21.  This rockstar got all the way down to 2.0 liters of wall oxygen when her pulmonary hypertension returned. Mid-August her oxygen support continued to increase and in September she had to be put back on a CPAP.    

In the beginning of October Sedeqe began to have episodes where she stopped breathing. The family decided to get a second opinion from Johns Hopkins Childrens Hospital in St. Petersburg, FL.  The top Congenital Diaphragmatic Hernia Surgeon said that her repair needs to be fixed because her organs are pressing back into her chest and causing her Pulmonary Hypertension and needing the additional support for her breathing.  The hospital Sedeqe’s located at thought the surgery would be too risky with where her stomach was located currently, but the family has decided to transfer her to St. Petersburg to pursue an option that will provide a better quality of life for her.   

Kirsten, Tony, and their three boys ages 5, 9, and 12 need to go with Sedeqe and support her through this surgery and recovery.  Tony will be able to continue to work but Kirsten will have to take a break from her job, losing that income.  They will have lodging and support through Ronald McDonald House but there are many other costs involved that they need help with such as relocating temporarily and medical bills/ possibly Cobra Insurance. 

Any donation amount is welcomed and appreciated to help this family have a little bit less to worry about.  We want all of their love and energy to go towards Sedeqe and her recovery.  She has gone from less than 5% chance of survival to a 6-month-old with a smile that can melt your heart and best dressed in her unit thanks to her mom!  Let’s all fight with Sedeqe  #SedeqeStrong