Hannah

Hannah

Hi my name is Brenda and my beautiful daughter Hannah who is 3 years old was diagnosed about 6 months ago with scleroderma. It has been the hardest year of my life.

Let me start in the beginning, when I had Hannah it was a very rough delivery, the cord was wrapped around her neck so tightly that she wasn't breathing, she eventually came around and little did we know at the time what a major role those first moments of her life would have on her. When she was 2 Hannah was hardly talking maybe 3 to 4 basic words, so she was evaluated and to make a long story short she was diagnosed with verbal apraxia, (a neurological problem in her brain that the words are there but she can't seem to get them out so there just scrambled around) which was caused by lack of oxygen at birth.

Hannah has had to endure many hours aggressive therapy. She was and still is going 4 times a week. She finally was starting to make progress, we where so hopeful then that's when the real bombshell hit. In the summer of last year I noticed this really hard area on her upper crease in her groin area so we immediately took her to the doctor's. They had no idea what it was and put her on some antibiotics, which did nothing so over the next week or so they put her on several different things which nothing seemed to help, so finally they sent her to a specialist. That was where we heard for the first time those dreaded words morphea/scleroderma. It was the most devastating day of my life. We knew nothing about this disease, we where scared to death (and still are) They immediately sent us to children's hospital.

There they ran a number of blood tests where she was also diagnosed with lyme disease and hypothyroidism (are these related some say yes some say no) so they put her on so many medications it made my head spin. First antibiotics for 6 weeks for the lyme disease, she was put on prednisone, zantac to help her tummy, folic acid and last but not least methotrexate (which we where taught how to give.) She also has to go to UV lighting therapy 2x a week.

She eventually was making real progress with all these medications so the doctor decided to cut back on the prednisone just a hair, within a weeks time it was back worse than it was before, so he had to up all her medicine. And recently she has just been diagnosed with asthma and was just put on 2 different kinds a puffers. We feel like it has been a never ending roller coaster.

I wish I could be more like Hannah, she has done so well through all of this not letting this bring her done (although she can do without the injections and the blood work every month) she's happy, upbeat and looking at us like we're a bunch a goofs for being upset all the time. It has been especially difficult on me she's my little angel - how could this have happened? What did I do wrong? How could I have prevented this? All I do is think about the future and what it holds for her and how people will treat her. Will she have the same opportunities as other children or even adults?

People always are saying to me be thankful she doesn't have the fatal kind, which I am, but it doesn't make any of this easier. If it were up to me I wish I could take it all for her to make her healthy again. I lived my life, let her have a chance to be happy and normal. And nobody around you really understands what you are going through, so it's so hard to talk to anyone other than my spouse. I hope as time goes on that we get better control of this disease for Hannah's sake. Hannah will always and forever be my hero.

If anybody would like to talk I would be honored to hear your story. My email address is brenandmike@altoonarail.net