Della's Journey
Donation protected
My name is Della. I am one of the 100 or so people in the world diagnosed with Neonatal Onset Multisystem Inflammatory Disease (NOMIDS). NOMIDS is a genetic disorder. My weekly injections cost $1,000 per week and my special feeding formula cost $38 per can.
I was born on April 11, six weeks premature. I spent the first six weeks of my life in Nortons' Neonatal Intensive Care Unit, (NICU). The doctors ran exhaustive tests to diagnose my condition. They ran so many blood tests I had to have a transfusion, and somehow I managed to break my leg while I was there. It was a rough six weeks at the NICU.
There is no cure for NOMIDS. NOMIDS is a disorder that causes persistent inflammation and primarily affects the nervous system, skin, and joints. People with NOMID have a skin rash that is usually present from birth. The rash persists throughout life and it changes in size and location.
In addition, I will require life-time monitoring by specialists and be continually tested for:
Vision and hearing problems
Central nervous system problems
Joint and cartilage inflammation and swelling
Kidney problems
Meningitis
Arthritis
Anemia
Any of these things could be deadly to me. I will also suffer with periodic headaches and recurrent episodes of mild fever. In addition, I also struggle with severe reflux and feeding issues.
Because there is no cure, my treatment will be focused on managing my symptoms over my lifetime. This means the doctors are learning how to treat me by trial and error. Some things work while others do not. So my life has lots of ups and down.
I have daily injections of my anti-inflammatory and other medications to manage my symptoms. I also need to stay away from sick people.
As you can imagine, this has been terrifying for Mom and Dad (Carly and Derek Bradley). Mom now stays at home to take care of me. Meanwhile, the medical bills continue to grow.
Despite all these challenges in my first weeks of life, I have shown glimmers of hope to my parents. I am a fighter, but my parents and I need your help. We can't do it alone. I will have a greater chance with support from friends like you!
Any help you would be able to offer is greatly appreciated! Thank you for your concern and continued prayers.
-Della
I was born on April 11, six weeks premature. I spent the first six weeks of my life in Nortons' Neonatal Intensive Care Unit, (NICU). The doctors ran exhaustive tests to diagnose my condition. They ran so many blood tests I had to have a transfusion, and somehow I managed to break my leg while I was there. It was a rough six weeks at the NICU.
There is no cure for NOMIDS. NOMIDS is a disorder that causes persistent inflammation and primarily affects the nervous system, skin, and joints. People with NOMID have a skin rash that is usually present from birth. The rash persists throughout life and it changes in size and location.
In addition, I will require life-time monitoring by specialists and be continually tested for:
Vision and hearing problems
Central nervous system problems
Joint and cartilage inflammation and swelling
Kidney problems
Meningitis
Arthritis
Anemia
Any of these things could be deadly to me. I will also suffer with periodic headaches and recurrent episodes of mild fever. In addition, I also struggle with severe reflux and feeding issues.
Because there is no cure, my treatment will be focused on managing my symptoms over my lifetime. This means the doctors are learning how to treat me by trial and error. Some things work while others do not. So my life has lots of ups and down.
I have daily injections of my anti-inflammatory and other medications to manage my symptoms. I also need to stay away from sick people.
As you can imagine, this has been terrifying for Mom and Dad (Carly and Derek Bradley). Mom now stays at home to take care of me. Meanwhile, the medical bills continue to grow.
Despite all these challenges in my first weeks of life, I have shown glimmers of hope to my parents. I am a fighter, but my parents and I need your help. We can't do it alone. I will have a greater chance with support from friends like you!
Any help you would be able to offer is greatly appreciated! Thank you for your concern and continued prayers.
-Della
Fundraising team: Team Della (11)
Beverly Wynn
Organizer
Raised $450 from 7 donations
Borden, IN
Derek Bradley
Beneficiary
Carly Bradley
Team member
Raised $225 from 3 donations
Leah Beth Timmons
Team member
Raised $100 from 1 donation
Tracy Lewis Ludwig
Team member
Raised $100 from 1 donation
Kari Walters
Team member
Raised $50 from 1 donation
