My daughter Adelaide is 6 years old. She is full of light, and joy, and one of the most resilient children I've ever met. For years she has been a fun-loving, happy, and perfect little girl with just minor bumps and bruises along the way. About 3 years ago, she was diagnosed with pretty severe hand ezcema. Over the years we babied her hands and treated them with lots of topical steriods. When the skin changes kept intensifying and changing, I was not convinced the ezcema was the right diagnosis. Since about December of 2014, more symptoms kept appearing. She had loss of strength in her hands, joint pain all over her body, fatigue, and decreasing range of motion in her fingers, hands, and wrists. Several trips to doctors and specialists gave us little to no answers, until I took her to a pediatric rheumatologist at Phoenix Children's Hospital. The physician, after months of extensive testing,gave us a conclusive diagnosis of Systemic Scleroderma.
For those of you who don't know what this is, Systemic Scleroderma (SSc) is an incurable, auto-immune disease, that can affect every cell and tissue in her body including organs, bones, muscles, tendons, and ligaments. It is a rare disorder, and even more rare in children. It is also potentially life threatening. It is already affecting her quality of life and her ability to perform simple tasks. This ailment is going to require a lot of doctor visits, monthly bloodwork, occupational therapy twice a week, and who knows what else. We are still in the process of finding out the extent of her disease, but with an unknown prognosis we have no end in sight.
I work in an emergency room at a local hospital as a paramedic. I don't make a lot of money but I love what I do. My employer provides insurance, but many expenses are covered in part. With the extent of testing that has been done and with Addy requiring unforseen amounts of testing, procedures, and medications down the road, I am having difficulty making ends meet.
To add to my responsibilities, I take care of my mom as well. She lives with us and has a diagnosis of Multiple Sclerosis, where she continually ends up being admitted to the hospital. Ocassionally she can care for Addy, but more often than not, she is too ill to help out.
They say it takes a village to raise a child, and I am coming to understand this very quickly, yet our village is small. It's just myself, my ill mother, and my Addy. I am a single mom doing everything I can to provide for my daughter.
It makes me leery to ask help from friends, family or complete strangers, but at this point my hands are tied. My child's life and well-being are my absolute priority. I'm not asking for a hand out... just looking for a helping hand. Addy is my whole world. I just need to make sure my Addy has every chance she deserves to live a happy and long life.
