Family seeks unique set of wheels for their teenager

By Lynn R. Parks

Brittani Bragg-Wortmann will soon turn 16. And, said her mother, she will need some wheels.

But not the kind of wheels that a typical 16-year-old wants. Brittani, who just returned home after more than 18 months in the Alfred I. duPont Hospital for Children in Wilmington, is in need of a handicapped-accessible van. Brittani would love to be able to go places, just to the store or even grocery shopping with me, said Kristen Bragg-Corsi. She hasnt had a haircut, other than in the hospital, for months. Or she would love to go to the movies. She cant even do that.

When Brittani needs to go to the hospital for checkups, she travels by ambulance. Other than that, Bragg-Corsi said, the teenager is confined to the house.

When Brittani was coming home, she was so excited, she said. Now, shes starting to relapse, to give up hope. We tell her that she has to get up out of bed, but she asks what shes getting up for.

I hate to beg for help. But Im at a loss. I just want to try to help her have something like a normal 15-year-olds life.

Brittani became sick in July 2010 and in December of that year was admitted to the A. I. duPont Hospital, where doctors diagnosed her with hemophagocytic lymphohistiocytosis (HLH disease), a disorder of the immune system. Patients with active HLH have too many histiocytes, or infection-fighting cells, which accumulate in the bodys tissue and can damage a variety of organs. The disease, according to the Histiocytosis Association of America, can be life-threatening.

Throughout her stay in the hospital, she underwent a number of severe treatments, including chemotherapy and courses of harsh antibiotics. Even now, Bragg-Corsi said, Brittani takes 14 medications, including anti-depressants.

Brittanis HLH disease is in remission. But because of steroids that doctors put her on to fight the malady, Brittani does not have any cartilage in her joints.

Eventually, her mother said, she will need a shoulder replacement, two hip replacements and a knee replacement.

Bragg-Corsi believes that Brittanis treatment could have followed an easier course. It took the hospital too long to take her symptoms seriously, she said. Instead of admitting Brittani when they should have, staff there insisted that she was healthy, she added.

I kept telling them that she wasnt right, that something was wrong, Bragg-Corsi said. But they kept saying, Oh no, shes fine. And they evaluated me, asking why I wanted my daughter to be in the hospital. I think that if they had caught her illness sooner, the treatment would have been easier.

On the other hand, Bragg-Corsi credits the physical therapy and occupational therapy staff at the hospital for getting Brittani going again when she had given up. In particular, she praises physical therapist Christy Shannon and occupational therapist Bridy Hamilton. They pushed her and pushed her, kept saying, Lets go, lets go, until she responded, she said. If not for them, I believe that she would have given up all hope.

The focus of Bragg-Corsi and her husband, Steve, now is on getting a handicapped-accessible van so that Brittani can leave the house. We dont need anything fancy, Bragg-Corsi said. We would be totally grateful for any help that we could get toward buying anything that we can find. If people can just reach into their hearts and help us, that would be great. Its not for me, she added. Its not for my husband. Its for our daughter.

For your information Donations to help the family of Brittani Bragg-Wortmann buy a handicapped-accessible van to take her places can be mailed to the family, 18485 Line Church Rd., Delmar DE 19940. Or they can be made directly into Brittanis bank account, in trust of Kristen Bragg, at PNC Bank.

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