Brandon Conaway Family-They will never fight alone

Brandon is a 15 year old male from Port Matilda, PA. He has a very complex medical history. Brandon suffers from two rare genetic disorders which include Klippel-Feil Syndrome and Wiedemann-Steiner Syndrome. His medical issues include severe Gastrointestinal problems which has led to him needing a Central Line for Total Parenteral Nutrition (TPN) which is a method of feeding that bypasses the gastrointestinal tract and allows nutrients and fluids to be given through an IV Catheter inserted through his chest into a vein. He also receives additional IV fluids through his Central Line due to chronic dehydration. He has a Jejunostomy tube in which he receives a small Enteral feed of specialized formula 24 hours a day 7 days a week....this helps counter balance damage the TPN is causing to his liver. He also has a Gastrostomy Tube that allows his belly to drain 24/7. He has an permanent Ileostomy due to a complete Colectomy in 2016 which has left him with only his Small Bowel. He suffers from Severe Acid Reflux, Severe Gastroparesis, CIPO, Dysautonamia Disorder, Asthma, Neurogenic Bladder, Iron Deficiencey Anemia which require him to have weekly IV Iron Infusions, Postural Orthostatic Tachycardia Syndrome, Chronic Clostridium Difficile Infections, History of Acute Septic Shock, Autism Spectrum Disorder, ADHD, Sensory Processing Disorder, Non Verbal Learning Disorder, Generalized Anxiety Disorder, and currently is being evaluated for Mitochondrial Disease / Disorder.

Brandon has been in and out of the hospital for the last 15 years and currently has spent 320 days of the last 365 days in the hospital. He has had countless trips to the operating room and way to many doctors appointments to count. He has spent the last 3 birthdays in the hospital along with every holiday. He spent last Christmas in the ICU. He has numerous specialists and currently receives care at several hospitals including:
Janet Weis Children' Hospital in Danville, PA
Cincinnati Children's Hospital in Cincinnati, Ohio
Shriner's Hospital for Children in Philadelphia, PA
Children's Hospital of Philadelphia in Philadelphia, PA
Penn State Children's Hospital in Hershey, PA.

Due to his Complex Medical Issues and the need of close monitoring and weekly appointments and Therapies Brandon rarely is able to attend regular school and has missed the entire 2018 - 2019 school year due to being Inpatient. Whether he is dealing with an illness or recovering from a surgery he continues his school work with the Hospital School Program or with Home bound Instruction.

He is such a strong boy who has endured all this with the help of his Mom(Heather), Dad(Michael), and older sister Ashley who is a Sophomore in College. This family is the essence of strength and fortitude. His mother could be a nurse with all of her knowledge of Brandon's medical problems. She is with him for every stay at the hospital and every moment at home. Mike is the family's pillar of strength working long hours to help keep the home front safe and taken care of all the while running to and from the hospital when he is admitted to spend as much time with Brandon as he can. Ashley is the glue that keeps the family together helping where ever she can all the while attending classes and working a part time job.

Unfortunately with Brandon in the hospital so often and for long periods of time Heather is not able to work while he is admitted and when he is home his numerous apts, therapies, and daily care only allows her to work a few days a week outside of the home. The family is basically surviving on one income. They have two vehicles but only one is reliable enough to make the long distance trips necessary for his continued care, appointments, and hospitalizations. Unfortunately that vehicle is starting to show the wear and tear from the constant traveling. 

Please consider giving to this very deserving family. 

Thank you in advance for your support.  Your donation is greatly appreciated. 

Family and friends of the Conaway Family