Help Us Get to CHOP for Dominik's Health

When Dominik was three months old he fell off his growth curve completely. Moving from the 50th percentile down to the 1st. At the time Dominik was eating appropriate amount of calories but not gaining. After months of supplementing with formula and fortifying his formula we were refered to Gi specialist. Unfortunately gi had a wait of three month and at this point Dominik was already losing weight so I brought him to the childrens hospital where he was admitted for a week. We were discharged with a high calorie formula that would hopefullY help him consistently gain weight. Unfortunately after discharge Dominik slowing stopped wanting to eat and would wait all day to eat just 4 oz. This concerned his GI who then admitted him to do more tests like egd and to place a ng tube to help him catch up with weight . Egd was negative and we ended up discharging hospital with the ng tube in place and continued to follow up with GI. Because Dominiks need for the ng tube was going to be for a while they recommended gtube placement. So he had his gtube surgery in march. Dominik has become completely dependent in his gtube for nutrition. During this time we have had many incidental findings like a lesion on his thalamus, and low cortisol levels but no reason as to why Dominik is having so many health issues. We applied to a program through the undiagnosed disease network at the Children’s hospital of Philadelphia and Dominik was accepted as a patient. Their whole goal is to figure out the root cause of Dominiks issues to hopefully get us answers and see what his future may look like. We now have dates to go see the specialist there in feburary. The program use to pay for travel but no longer does so we have to pay to get there and for a hotel incase the ronald mcdonald house doesnt have space for us to stay. This past year has been really crazy for us snd we appreciate anyone who can help us make it to Philadelphia. We are driving there as gas should cost use about 200 there and 200 back. The hotel will be the most expensive if we end up not being able to get a room at Ronald mcdonald house. Estimated discounted rate for CHOP families on the hotel is 89 a night plus tax . We will be in Philadelphia for four days the 10th-the 13th. Thank you for any and all support.