CURED Foundation

To read more about any of these children, click the picture for their complete story

	BRITTNY I'm sixteen; I should be engaged in living the teenage life, right? Not in my case. My situation is very rare according to my doctors. I am a girl living with eosinophilic gastroenteritis. I may never grow out of this disease. This is my story, and here is where it begins. When I was little, my parents tell me I wouldn't eat much. They thought I just wasn't hungry, but what they didn't know, was that it actually hurt to eat. Eating food is an essential to survive. If it is so vital, why does it feel like someone is stabbing me with a knife in the stomach after I eat? This is a question I ask myself every day. When I was 11, I finally got the attention of my parents.
	ALLISON Allison is a happy 8 year old girl. She was sick as an infant and was diagnosed with GERD at the age of 4. By the time she was 6, Allison was constantly sick and in pain. It has been almost 2 years since her EE diagnosis. We have been able to trial a few foods which have passed, but in the meantime Alli's dad has devoted a lot of time playing with recipes and alternative ingredients to replicate some of Allison's favorite foods. Here is an essay that Alli wrote for her 3rd grade assignment: I am thankful for my family because they love me more than anything. They make me safe food. By the way, I have EE and that means I have a sickness that makes me sick to a lot of food but that doesn't hurt my life. NO! Not at all. That's what I am thankful for. Love, Allison S..
	ISABELLA Isabella was born in February, 2003. From birth on she had problems eating and sleeping. She cried all the time and slept very poorly. The pediatrician said to give her formula when she was three days old. I breastfed her and supplemented her with cow's milk and then soy formula but it didn't seem to help and she resisted it, refusing it entirely by six months of age. It took her four months to regain her birth weight. She never spat up at all but was skipping entire nights of sleep from the time that she was less than one month old.
	VERONICA & LUCA I am Luca's mother. I decided to try living without food for a week. For nourishment, I drank Neocate. I wanted to see what it would be like psychologically. I also wanted to find out what the formula actually does to a healthy tummy, to separate it from the illness symptoms my son gets. I hoped this would help me to understand life from his point of view and to recognize certain symptoms when he experiences them. Read more to see if I made it through the week....
	KYLE Kyle was born on May 15, 2005. He lives in rural New Mexico with his father, Josh, his younger brother Tyler (2) & myself. Josh & both our children suffer from a rare blood disorder called Hemolytic Anemia or Hereditary Spherocytosis, this is where the marrow produces blood cells that are shaped like spheres causing the spleen not to recognize the blood cells as it's own & therefore the spleen destroys the blood cells & increases the number of white blood cells to 'fight the infection' that doesn't exist. This of course complicates everything! Josh & Kyle have very mild cases, Tyler on the other hand has a more severe case. I was so busy tending to my younger child who was very (obviously) ill that I pushed all of Kyle's symptoms aside as 'normal childhood' illnesses & viruses. I never imagined that he was suffering from something so complicated & so painful.
	BRANDON At 13 months old, Brandon was diagnosed with Eosiniphilic Esophagitus/Gastroenteritis The disease causes his digestive tract to become swollen and irritated to the point that it is nearly impossible to tolerate any food or drink by mouth. Compounding these problems are the fact that Brandon has severe allergic reactions to ingredients that are found in most food products, namely milk, eggs, wheat, soy and peanuts. Brandon’s diagnosis was made when, in March 2005, he began to refuse any and all fluids by mouth.
	JESSE Jesse was born on August 7th 2004. Right away we knew something was wrong. He had awful excema that just kept getting worse and constantly rubbed his eyes. All the doctors said it was just newborn skin, but I knew it was something more than that. He was a very fussy baby, never slept, always moving around like he just wasn’t comfortable and would wake up at night screaming in pain.Finally when he was 6 months old we were referred to an allergist When he tested positive to milk protein allergy we switched to soy formula and thought our problems were over. But he didn’t get better, in fact, he seemed to be getting worse. We were then referred to a GI.After a battery of excruciating tests he was finally diagnosed with Eosinophil Esophagitis in December of 2005.
	SAM Probably because our lives seemed so “typical,” marching along like many young families across America, we really felt blindsided when Sam got sick. At first we thought he had the stomach flu when he began vomiting in Kindergarten. It was soon very clear though, this was much more than a tummy bug. He had constant stomach pain, vomiting on and off, diarrhea, pale, nausea, lack of energy, headache and joint pain. He was initially diagnosed with an ulcerated stomach and esophagus, hiatal hernia and Acid Reflux. Diligently we followed doctor’s orders, but he he wasn’t getting better.
	JACOB When Jacob was 3 months old, he developed a cough that later turned into constant, round the clock vomiting, sleep disruptions, back arching in pain and a lot of gas. After a bite of frozen yogurt, he experienced an anaphylactic reaction, which clued us in to thinking about food allergies. After many exhausting trips to the GI and Allergist in Memphis, TN and several scopes, we were told it was just GERD and that he would “grow out of it”. It has nothing to do with food, we were told. I felt differently, but was labeled as a crazy mom. At age 2 ½, he was about the size of an 18 month old and had stopped growing. He was not verbalizing. He was not sleeping more than 2-3 hours at a time (neither were we).
	ASHER When Asher was 6 weeks old, I took him to the pediatrician for what I thought was a bad case of “baby acne” on his face and torso. The doctor diagnosed it as eczema, most likely caused by food allergies. Since Asher was exclusively breastfed, I went on elimination diets for wheat, soy, and dairy for a week each. With no change in his skin, our pediatrician said I could go ahead and eat what I wanted, and we treated the eczema with prescription creams until Asher was old enough to be allergy tested. At 12 months, Asher was having bad diarrhea, his skin wasn’t much better without the use of the prescription creams, and he stopped growing. In May 2006 at 15 months, a gastroenterologist scoped him and found his whole digestive system riddled with eosinophils and was diagnosed with Eosinophilic Gastroenteritis.
	HAILEY Hailey was born in January of 2003. The fact that she was not entirely healthy was fairly obvious to mom & dad from the beginning; however, it took a little while to convince the doctors that the more than thriving baby was sick. Hailey was hospitalized with an upper respiratory infection at only 12 days old. Her first newborn screening came back borderline for Cystic Fibrosis, and the news was bittersweet when other screenings came back negative, leaving us with the question, what is wrong with our child? It took until she was 15 months old before we were referred to a Gastroenterologist. (He conducted the tests that eventually led to the diagnosis of Eosinophilic Gastroenteritis, but he didn’t make the diagnosis). We hand delivered the Gastroenterology records to a doctor at National Jewish Hospital, where she was diagnosed with Eosinophilic Gastroenteritis.
	HANNAH Hannah was diagnosed at 11 months old with EE. She presented with waking at night screaming uncontrollably, she was never able to lay flat on her back. She would drool out the side of her mouth and after we would feed her baby food she would start arching her back and going into these stange positions. I finally took her to the GI doctor who said it was probably reflux. After months of no response to PPI's they finally scoped her. That is when the the EE diagnosis was made. She was started on Elecare along with food and after 3 months they wanted us to start the elemental diet. We were hesitant about taking her off food. We waited 6 months and then went to Cincinnati. Dr. Putnum told us the same thing and we started it as soon as we got back home. Well 4 months later after being on solely elecare she was rescoped and her count dropped dramastically.
	MIRIAM Miriam was born in 1995 in Jerusalem, Israel. She never was a happy baby.. she cried all the time the only time she would be quiet was when she was nursing. She would never sleep more than 2 hours at a time. We never realized anything was wrong with her at the time. At 9 months old we introduced food for the first time. She started with diarrhea but I didn’t realize there was a problem. Then one day we had given her an egg for dinner and her face swelled up and then the diarrhea got much much worse. She was having up to 40 diapers a day. We were finally referred to a GI doctor who did many stool tests and they all came back normal so no one could figure out what was going on. During this period she was having weekly fevers going as high as 105.
	TZIVIA Tzivia was born in 2001. Right after she was born she just screamed, to the point they didn’t want her in the nursery. Her first diaper was full of blood. When she was about 2 weeks old she was admitted into the hospital because she was below her birth weight. They kept her there till she got to her birth weight, which was about 2 weeks. From my experience with my older daughter I had a feeling it was EG as well. The doctor didn’t think so. At about 5 weeks old she turned blue after I nursed her and she was on my shoulder. They thought this was reflux so they started her on Zantac then. At 6 weeks old she threw up blood.
	YISROEL MEIR Yisroel Meir was born in 1997 in Jerusalem Israel. When he was born he was coughed alot. On his second day of life he had several episodes of turning blue. He was later diagnosed with Asthma. Much of his babyhood was with bad asthma and sick constantly with ear infections. He had 4 sets of tubes in his ears. Yisroel Meir could only nurse with me on a very restricted diet of no gluten, milk, soy, eggs, peanuts. Whenever we would introduce any formula he would get sick with either asthma or vomiting. I nursed him fully till he was 2 years old with the hope that nursing would build him up that he wouldn’t be as severe as his big sister. He always had a bloated stomach and he had many days when he was young of weakness and just lay there staring. He didn’t speak till almost 4 years old
	NATE Within minutes after birth Nate was rushed off to the NICU and intubated within hours. Nate was only 5 weeks early, weighed 6 lbs 7 ozs, and was 19 ½ inches long. He was not considered a preemie, but Nates lungs were very underdeveloped. He was unable to breathe on his own his first 14 days of life. At 6 weeks of age Nate began projectile vomiting. He was diagnosed with Severe GERD and started reflux medications at that time. In July of 2002 Nate had a brief hospital admission for wheezing, and low O2 Sats. From July to September he did great, but still continued to reflux despite the meds and thickened feeds. In September of 2002, Nate was a very sick little boy. He was admitted into the hospital for what was thought to be Pneumonia, according to the chest x-ray. After 10 days of IV antibiotics Nate was still on steroids and oxygen. And was still very sick.
	CHAYCE I had just started introducing solid baby food to Chayce and he seemed to be eating like a CHAMP. He got what I thought was a cold, slight fever, having bowel troubles and congestion. He was placed on an antibiotic for an ear infection and then he started cutting back on his eating. I then took him back to the doctor as Chayce was struggling to have a bowel movement. He was literally lifting the carpet, to have one. We were introduced to suppositories, laxatives, and enemas. Nothing was working and at this point I could not understand why Chayce was so impacted. At 10 months Chayce was FINALLY, referred to the Gastro Department, where they discovered he was SEVERLY impacted and prescribed him Miralax. After this Chayce started crawling and walking, to us it was like the medication was a miracle, Chayce could move, now lets try and get some food him right?
	JERAMEY My son, Jeramey Hill, began his battle with an eosinophilic disorder 13 years ago at the age of 5 months. After 5 months of being told that my son was nothing but a fussing baby, I decided to take him for a 2nd opinion at Seattle Childrens Hospital. After an endoscopy my son was diagnosed with eosinophilic gastroenteritis. He was started on a dose of zantac twice a day and neocate formula (which at that time was not even FDA approved). After no luck with treatment and several doctors later, we returned to Seattle where doctors inserted a feeding tube.
	MATTHEW Matthew is a very happy young boy who loves to go to school and make people laugh. He takes pride in his school work and it reflects in his grades. He loves to swim and is on a swim team. He also enjoys riding bikes with his friends. Matthew has been a totally normal, healthy kid until late December, 2007, at 10 years old. He started to complain about stomach pain constantly. The few months leading up to this, my husband and I noticed that he was looking bloated. We thought that maybe he was putting on a little weight. The beginning of January, 2008, the stomach pain became much worse and landed us in our local ER. They ran the usual tests to rule out anything life threatening. The one thing that popped up was his white blood count. The next few days, Matthew’s pain was increasing and nothing seemed to help him. We ended up at UCLA, where at first he was diagnosed with a virus. I knew in my heart, this was no virus. I didn’t know what was wrong with Matthew, but this was not a child that complained about being sick, ever.