Help Lucy fight Arthrogryposis and ZC4H2

This is Lucy...she was born 6 weeks premature and has ongoing permanent medical issues. Lucy has a pathogenic mutation of the ZC4H2 gene. This is an ultra rare condition. There are less than 50 people worldwide with this mutation, and Lucy is the only person known in the world to have her specific mutation.  This gene causes the following conditions: Arthrogryposis multiplex congenita (AMC). Muscular atrophy of pelvis and lower extremities. Trunk hypotonia and decreased trunk stability. Dysphagia. Respiratory distress. Joint dislocations of mainly hips. Elevated muscular tone in lower extremities. Spasticity. Dystonia. Autonomic storms. Camptodactyly. Apraxia of speech. Oculomotor apraxia. Cortical visual impairment. Epilepsy. Global developmental delay. Infant mortality rate of 36% in the first year of life. Lucy has many of the associated conditions related to this specific gene mutation. Including Arthrogryposis multiplex congenita (AMC), vision impairment, cerebellum underdevelopment, feeding difficulties, critical airway, rocker bottom feet, developmental displacement of the hip, pectus excavatum, narrowed inferior vena cava and small stature. Lucy has a G tube for feeding as she is unable to have anything orally due to her narrow airway and larger epiglottis. She also has daily physio therapy and medications.  Lucy will require extensive medical supplies and equipment, therapies, surgeries, doctor's appointments and nursing assistance for her entire life. To date there is no known cure or treatments. We have started this fundraiser for Lucy to give her the best chance to have a better quality of life. Thank you to everyone who is able to help out. We appreciate your thoughtfulness, kindness and support.