Hi there! We are Kristen and Joshua, Mom and Dad to two wonderfully rambunctious boys, and our precious three-year-old daughter, Chloe. Chloe was born in the Summer of 2018 and we spent the first four months of her life in the Pediatric ICU at Mayo, in Rochester, MN. While we were inpatient, Chloe had to have a Tracheostomy placed so she could breathe and also a G-tube for feeding and other surgical procedures to ensure her safety. At a little over a month old, she was diagnosed with Epilepsy and started having multiple kinds of seizures that effect her almost daily. During our stay the doctors were puzzled and could not come up with a diagnosis for all of the medical anomalies that were affecting Chloe. In the Spring of 2019 Chloe was diagnosed with Bohring-Opitz Syndrome - a diagnosis that has been given to less than 250 individuals worldwide. BOS effects the ASXL1 Gene and it effects one's growth, development, and various organ-systems. For Chloe, BOS means low muscle tone, contracture of her extremities, epilepsy, hearing and vision impairment, non-verbal, central apnea, feeding difficulty, airway anomalies and more.
Many of you that know us, have asked over the years how you can help us, our family, the boys or Chloe. And our hearts were overwhelmed by the number of people who care for us and our well being; mentally and physically. Our response was always, "please just pray for us" because we didn’t know how to simply say what we really needed. We have recently received letters regarding medical bills and ongoing monthly care for Chloe that is an amount that is not within our means to pay. With the exception of about 4 months, Joshua has stayed home since Chloe’s birth in order to help care for her and take the lead on her medical care. This has been a huge financial loss for us. This has led to an insurmountable pile of medical debt stemming from our months in the PICU and at Ronald McDonald house to now. In order to move forward with providing for Chloe and the boys, we need help. Help to pay bills and help to stay afloat. So friends and family and even complete strangers, it is with very humble hearts that we ask you for your help now. Anything that you can give is greatly appreciated and will go such a long way to providing for our family and meeting our needs! We still want to hear from you, that you are thinking of us and praying for us, but we have a real financial need that we can no longer ignore. We love and appreciate you all and thank God for the new friendships we've made along our journey. We can’t wait to be done with our never-ending “respiratory season” of COVID so we can see you and hug you and talk to you face to face! We miss you all very much! Thank you so much for all the love and support!