This is the page of Rico-Jay, a 7 year old boy what his whole life has problems with his digestive system.
After years of fiddling around with various medications, rinses from 'above' and 'below', doctors discovered that Rico-Jay has a Dolichocolon, which was so distended that it was named as dolicho-megacolon.
Far too long and tortuous colon or, as the surgeon says, "Rico-Jay's colon is just like ours, the small intestine in the abdomen.
A German doctor called it, paralytic intestinal (intestines cripple).
At some point, Rico-Jay was admitted in the hospital for two days every month, to flush. When that no longer worked and he became sicker, an ileostomy put in on December 17, 2013.
Basically, a stoma in the small intestine.
The hope was that Rico-Jay would be pain free and symptom-free. Unfortunately that did not happen.
After some more testing, it appears that he also developed a slow gastric emptying and motility disorders severe alpha1-antitrypsin deficiency.
With a lack of protein, which is produced by the liver and colon, also lung and liver problems can occur.
Because Rico-Jay's mother has inherited and rare connective tissue disorder Ehlers Danlos, Rico-Jay was also tested for that as well and unfortunately recently, diagnosed positive.
Because Rico Jay still has daily abdominal pain, nauseous and dizzy, his colon is still in his body, he gained more than 11 kg in less than a year even though he does not eat much. Due to the fact he mainly eats according to the FOODMAP diet, he often extremely tired (which is in line with an ileostomy)
He often needs to stay home from school because of its poor condition.
As you understand, we have continue concerns for exist Rico-Jay.
Through a friend in Boston, Mass., who is pulling for Rico Jay, we have come in contact with Children's Hospital Boston which can provide him can provide a better life, It is our hope that he can be a 'normal' kid, without pain and without stoma, who can play again, romp, can a sport like other kids his age.
Because the insurance only reimburses Dutch standards, and the family itself, does not have the financial resources, they established a foundation to raise the funds in order to meet the bills of the hospital stay and the trip.
"Foundation Rico-Jay to America"
This page is a diary of young Rico-Jay’s life and gives you the opportunity to donate for a better life for him, better, please visit "Foundation Rico-Jay to America"
We are very grateful!