Please: I am ever so sorry to hear of your daughters' situation. I too am a mother of a 13yo boy diagnosed with severe pan UC over a year ago. To be blunt, it has been a virtual rollercoaster the last year. I can't tell you how many times I have questioned, "How could this happen to my perfectly heathy boy, my only child?" The countless times I would just breakdown balling because this wasn't suppose to happen to US, but all the time trying to never show my fears to my child. But it did and here we are. I am not a religious freak by any means, but I do believe that we all have a purpose here and I strongly believe that God tests the best of us. This is the challenge that God has tasked my son with. What I try to keep into perspective and to also teach my son, is the sincere knowledge, that although life really stinks right now literally someone else out there has it worse than he does. I certainly wouldn't want to be in their shoes! I tell my son, "You could be your grandpa." He's blind. I can only imagine the challenges he faces every day liveing alone in the middle of nowhere on the top of mountain here in rural Alaska. I wouldn't want to be him, but I also have great respect that he has continued out his life long dream regardless of the blows he's been dealt.
My son still struggles a year later to get his bleeding to stop. We've been in and out of the doctors every couple weeks for the last 15 months traveling over 100 miles every time to get to our only doctor up here that will be leaving the state in 6 weeks. We have no support up here, and very soon no doctor either. But we try to make the best of it and find laughter where it is sometimes difficult to find. When he goes to get poked every couple weeks, I am his screamer. He receives the needle and I scream for him based on the level that he sqweezes my hand. I remember one visit he hadn't dranken enough water prior to his blood draw. The guy poked him and didn't have any blood come out. He went to poke him again and my son stirnly stated, "Hey man I didn't come here for no buy one, get one free stuff!" Of course the gal last week told him he had 4 Alaska oil pipelines in his wrist. You just have to try to find some fun because otherwise it certainly WILL be depressing!
I think my savior has been research. Research that tells me this disease probably won't kill him tomorrow. Stories from other folks and their experiences of successes and unfortunately some not so successful. But in the end it will all come together if WE DON'T LET IT BEAT US DOWN!
Hang in there mom!