My story is about our daughter Britani. She was a normal healthy child, but at the age 22 while in college she developed type 1 diabetes. No one in the family has this condition.
Things started to go done hill at age 26, she started with diarrhea nonstop up to 30 times a day. We have tried local doctors, Cleveland Clinic, two years back and forth to U Penn, Temple, and three years with Thomas Jefferson. All would do the same tests. After everything was said and done they all have the same diagnosis. None, we are sorry but sometimes there isn’t an answer.
They have tried experimental drugs and procedures. Getting her back and forth to these out-of-town doctors has been agonizing. Stopping the car every five miles to use restrooms, staying in hotels. She has not gone more than four weeks without being hospitalized, dehydration, infections in every part of her body. Feeding tubes, at times she is too weak to walk or even sit herself up.
She now needs a kidney and pancreas, she has to self-catheterize. Caring for her and trying to work has to be hardest thing I have ever done besides watching her suffer for nine years. Many times I have gone to work without any sleep at all, trying to be a normal person and listening to their normal lives. Wishing for one day of normal, one hour for her not to have pain. I stay at the hospital with her as much as could. She sees nine different doctors frequently.
Britani is on peritoneal dialysis and I have to hook her up nightly, she is too weak and her hands don’t always work. She goes to the dialysis clinic at least twice a month. I give her all her meds, take blood pressure, insulin, Epogen shots to build up her blood, bathe, feed, and take her to the commode at least five times a night.
Britani either uses a travel wheelchair or a walker, her dad carries her up and down the stairs. She doesn’t show how heartbroken she is, all she ever wanted was a child of her own. There is too much to mention. I cannot afford to stay home and care for her and it kills me more and more to leave her.
She has two younger sisters and every day I wonder will they wake up one day and start having symptoms and have the same problems. Never knowing what caused this or why.
We now have a granddaughter, she has lifted all our spirits tremendously, the only light in my life. But I worry about her. Britani is the strongest person I will ever know, we cannot figure out what keeps her going day after day with very little complaints. Just found out that she had shingles in both eyes and all she said was her eyes were bothering her and blurry. Doctor said it is very painful. I’m hoping to find a way to stay with her all the time.
I’m on FLMA but really need to work. Life didn’t come with a book that said save every penny, you are going to need it for your dying child. I’m trying very hard to be a wife, mother to all my children, grandma, and daughter. Trying to help my daughter go through all of this with dignity and strength, because at times I have lost mine. I can’t watch her suffering. Have nurses treat her with the respect she deserves.
I think what if this was your family member. I would give my life for her.