Melrose Teen Battles Rare Disease
Can you imagine sitting down to the dinner table and not being able to eat? That's the reality for 1 in 10 thousand people because of a rare disease that causes the body to attack food. One of those people, teen from Melrose lives his life nearly without food.
It sounds like a dream diet for a kid... all the cotton candy, dum dum pops and smarties you can eat. But when that's virtually all you can eat, it can feel more like a nightmare.
Cristobal Serrano said, "Giant bag of chicken... I can't have it."
The list of foods 14 year old Cristobal Serrano 'can't' have is endless, it's easier to list the few items he can.
Cristobal's Mother Jodi Serrano said, "White rice, white potatoes, dum dums, smarties, cotton candy and canola oil."
It's called Eosiniphillic Esophagitis... a digestive disease that causes white blood cells to attack food as it passes through the esophagus.
which causes extreme irritation.
Jodi Serrano said, "Back in september of 2010 it was so inflamed that he had to have it re-opened."
Cris relies on formula through a feeding tube to survive. He's hooked up to a steady drip 20 hours a day.
Cris said, "I just open this up and I hook it in and I'm done."
Cris's parents have always known something was wrong. He's had limb pain, headaches, sore throat and nausea for nearly his entire life. But life changed drastically in April 2010, when cris was officially diagnosed with the rare disease.
Jodi said, "It's crazy, you know... no kid at 14 should have this many medical records." She gains strength and a lot of information from talking to other moms going through the same thing on Facebook.
She said, "The doctor gave me the diagnosis of it for him and I have no clue what this is....they walked me through the process... which now I'm walking other people through the process."
And exceptionally, Cris just makes it work. He said, "If I really want to eat something like a sub or something like that or I want to make myself a sandwich...I just find something else to do. I'll go watch tv or I'll go eat some smarties or I'll get on the computer something like that."
Because there is currently no cure for Eosinophillic Esophagitis, the Serrano's have no choice but to manage it. Cris goes to school and can do what most other teens do, with one major exception.
Cris said, "That's basically all I can eat."
The disease can stop flaring and go into remission, at which point a patient can re-incorporate some foods into their diet. But Cris Serrano's condition is complicated by another digestive disorder called Gasteoparesis. Doctors say more research is needed to understand the cause of EE and possible treatments.
- Teen battles rare disease
- Rare Disease Causes a Desperate Feeling For Food
- Gainesville Boy Writes Book to Raise Money for Friend with Rare Disease
- Local tech startup uses clinical research to fight rare eye diseases
- Your Health: Colon Cancer Awareness Month, Screening Rates Still Low
- Rare Brain Disease Often Mistaken for Alzheimer's
- Melrose Man "Spoofed" by Company
- Melrose Residents Voice Concerns about Urban Development
- Storm Damage In Interlachen, Melrose and Micanopy
- Melrose residents, business owners oppose possible Dollar General construction