- The disease that terrorizes our family on a daily basis.
- The disease that stripes children of the simple joys of the world.
- The disease that has caused my baby girl, and many others just like her, so much pain it's unimaginable.
- The disease that is a puzzle to doctors.
- The disease that has triggered her body to deteriorate in a domino effect because we don't understand how to control it.
It's the biggest word in our families vocabulary, but a pronunciation that our 4 year old learned to say as she overheard so many talking about her baby sister. Eosinophilic Gastrointestinal Disorders are an emerging health problem that doctors are finally beginning to understand. But for our family and 3 year old Annabelle - an elementary understanding of this disease isn't enough to keep a smile on her face. We need answers, help and a cure NOW.
Imagine setting a table and not allowing your child to eat with you. Imagine planning a birthday party and the frustrations of trying to find a replacement cake because your baby cannot have a real cake.
Annabelle is to the point she no longer cries or moves when having labwork drawn or an IV started.. even after multiple sticks (or as we call them, pokes). We stalk her constantly when her body is suddenly weak and her legs are sleepy because she cannot walk any longer. Seizures sprout out of nowhere. Her liver has failed to the point protein in her body turns to ammonia and is filtered straight to her blood and neurological system.. then her heart and so on. This causes seizures, an inability to walk, think, learn or speak.. Balancing her protein intake is like doing a chemistry experiment. Too little protein = she starves to death, Too much protein = she's poisoned from the ammonia. Doctors, speech therapists, neurologists, MRI's, endocrinologists, nutritionists and drugs - just a tiny piece of our lives.
Like most children with this disease, she has a 'Tubey'. Depending on which area of their body is failing and destroyed from the disease, those with EGIDs can have different or multiple tubes to keep them alive and nourished. We've only had two so far and our prayers are that Ohio will not deliver news that we will be adding more. Annabelle has endured NG-Tube changes more times than we care to remember. As parents, our hands have subjected our baby to more painful tube placements than we ever should.
She's undergone almost 20 surgeries to investigate the presence and damage of the disease. She's had a Gastrostomy Tube surgically placed into her stomach at the same time the surgeon removed the damage to her esophagus and stomach. Lots of kids have damage lower in their GI system and require a GJ-Tube, just like Annabelle's Tubey-Buddy Ryan. His small intestines are so damaged, he cannot use his esophagus or stomach any longer. He is fed thru a painful tube that delivers a medical food directly into his small intestines. These children also have Colostomy bags because the disease has eaten their large intestine / colon.
Those fighting EGID's are heroic. But there is very little hope for a happier, healthier, more promising quality of life. Most will never experience the taste of a birthday cake, be able to taste their own cooking, some cannot even enjoy the outdoors or a swimming pool. Surgeries, endoscopies, biopsys continue every several weeks for rest of their lives where they are subjected to more rounds of anesthesia and the dangers of an OR. Medical costs are astronomical. Sleep is only something people talk about. In-home nurses are what our homes are blessed with to help care for these children.
So many others, just like Annabelle, live every day wearing a smile but hiding the pain. Their future is heartbreaking but their optimism is absolutely unreal. They fight depression as toddlers and they see themselves as 'different', when all they want is to be 'normal'. Our babies and all those fighting, deserve an opportunity for hope and for a cure. Children's Hospital of Cincinnati is one of our country's research hospitals for Eosinophilic Disorders. These research and studies are funded by donations and the organization APFED and CURED whom have been the biggest assets for finding the answers we need. Take some time and visit the sites below to learn more about what they are doing and how you can be involved for all those fighting, just like Annabelle.