Our sweet girl, Chloe, was born the summer of 2018 with multiple anomalies including; a cleft lip, small stomach, small nasal passage and jaw, agenesis of the corpus colloseum, hearing loss, and an irregular optic nerve shape. In the Spring of 2019 she was diagnosed with Bohring-Opitz Syndrome (BOS). BOS is a diagnosis that has been given to less than 250 individuals worldwide. It 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. Today she has a trach, is on a ventilator 24/7 and receives all feeds through a gastrostomy tube, has various types of seizures with her epilepsy and has obstructive apnea. She also wears a Baha hearing aid, and glasses when she can tolerate them. Despite all of her extra "accessories" she is a happy Daddy's girl, loves laughing with mom, and enjoys when her brothers and sister give her hugs or tell her jokes and stories.
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 and has led to an insurmountable pile of medical debt stemming from our months in the PICU. In order to move forward with providing for Chloe and the boys, we need help. 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 help us stay afloat; providing for our family and meeting our needs! We love and appreciate you all and thank God for the new friendships we've made along our journey. Thank you so much for all of the love and support!