A warrior.
That’s how Dixiana describes her 6-year-old son Cristian, of Chicago City. Despite his ongoing battle with a disorder, neurofibromatosis (NF1) Cristian's continues to inspire and bring smiles to everyone he meets. When Cristian's was nearly 3months old, he developed what doctors refer to as “café au lait” spots on his skin. Dixiana also noticed that he seemed to be having more at age 5. Dixiana noticed one summer 2012 Cristian had hair in his private area strong manly smell in his under arms felt she had to take Cristian to a doctor right away.
Dixiana brought Cristian in to the doctor his pediatrician before she send Cristian to a specialist he had to get some test done blood work x ray of his bones and urine. A week later results were in Dixiana received a call from pediatrician the results were as she expected high hormones she explained that his bones were developing like a 14 year old boy and he was going through puberty it was like a 5 year old stuck in a wrong body. Since summer 2012 and start school year 2013 Cristian changed completely from a child to a young man but he trying fight and be a little boy again with this he would need help from a specialist just a few days before Halloween 2013 The doctor recommended see specialist and to buy him deodorant.later after He had an MRI done to see if he had a tumor along with eye exam with an Optometrists to see if this affecting his vision (NF1) can cause problems in the way the body functions also went to talk to hormone specialist and another doctor specializes in (NF1) The doctors going over his tests of high hormones making him grow and hitting puberty early and the “café au lait” spots they diagnosed Cristian with neurofibromatosis type 1 (NF1), which is a syndrome that can affect many parts of the body, including the brain, spinal cord, nerves, skin, and other body systems. NF1 can cause growth of non-cancerous tumors on the brain nerve,also produces skin and bone abnormalities — and for which there is no known cure. The diagnosis Dixiana took it hard one because she was expecting and knew she had to be taking care of her new born and be at Cristian's many appointments she had gone through 4 appointments in the month of October.That Thanksgiving was incredibly tough. She was dealing with her sons devastating diagnosis. Lets back up Cristian was born premature 4 pounds he stood in the hospital for a month (in the NICU) Dixiana didn't even get a chance to hold him when he was born and till age 2 he had been getting nurse come check on him at home and at 6 months he started receiving services for therapy he was late in many things for example grabbing a toy and speech also he was born feet outward and Dixiana took him to a Orthopedic and from there hospital made him braces to make his hone develop normal if not his feet didnt progress hes get surgery but all went well.Dixiana did all She could to pull herself together and make it a happy Thanksgiving for her Family.” Dixiana couldn't believe again Her son had to be in a hospital most of the time but now with a disorder theirs no cure just Doctors telling her take it one day at a time.
In terms of Cristians ongoing treatment, he had surgery get implant help him stop going through puberty and maybe calm his adhd that (NF1) caused. Learning disabilities occur in about half the children with NF, some might need extra help in the classroom. “Surgery hit him hard,” says Dixiana. He continues to suffer from effects he will never understand this disorder is genetic but none of Dixiana's or her husband family have this so Cristian's may be the first to pass it to his children because it affects one child and then passes on. The good news is after surgery hormones for puberty were under control but now it was him growing that was an issue.They continue to test him his test was to be without eating 4 hours he missed school for this test and put an IV and every 30 min get blood out of him and he had drink juice to see his hormone level to check if he was still making too much growth hormones Dixiana had to go for the results Feb 13, 2014.
Cristian's most recent results he will see physiatrist to talk about his adhd he needs another MRI atleast 2x a year check he does not get a tumor on his head because thats the side affect of (NF1) Cristian will be getting his heart checked to see if its growing and a sleep study because he hardly sleeps well. The medicine to stop him from growing and having health issues are 3 shots everyday or 1 time a month but that shot has never been tested in kids the doctor doesn't know the side affects “We’re all praying for a miracle,” says Dixiana.. Doctors are hard at work in search of better treatments for Cristian and other kids and adults living with NF. Until then, only thing Dixiana's does cheer her son up and make him happy because all he says is " Mom why cant i be normal"It’s a lifetime disorder, she says and that our family never knows when their will be good news or bad Her perspective of time has certainly changed. She says she appreciate her kids even more now. She has been reminded that health is not guaranteed and that anyone can develop medical issues at any moment. all Dixiana knows she has never met a boy as strong as her son Cristian!
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