Sofia 5 year old with severe Crohn's disease

Hi, this is Sofia Maharaj, she is 5 years old and has Crohn's Disease.

She was born in Trinidad and Tobago but is currently in the U.S. receiving medical attention. Sofia began showing symptoms of the disease at 6 months old. Her parents, Sharlene and Kishore, tried getting a medical diagnosis from doctors in Trinidad but they could not figure out what was wrong nor could they help treat her. Sharlene decided to try coming to New York and visiting a G.I. specialist. The doctors in New York were still not sure what was actually causing these issues in Sofia. At 3 years old, after countless tests, they finally diagnosed Sofia with severe Crohn's disease. For those unfamiliar with Crohn's disease, it is a type of inflammatory bowel disease (IBD). It causes swelling of the tissues (inflammation) in the digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. This disease currently has no cure and can only be treated with immunosuppressant medications. It also does not commonly affect children and therefore the treatments are not specifically made for children. Sofia was put on medications made for adults including the use of steroids which has terrible side affects. Doctors tried many different medications over the years and none of them worked, the next option was surgery. At 5 years old, the doctors decided to move forward with a surgery which had to be completed in three stages. The first stage was removing the large intestine and creating a stoma in Sofia's belly to allow waste to be collected through an external pouch. The second step was a reconstructive internal j-pouch and the final surgery was the stoma reversal which would allow her to pass stool normal. Sofia completed her last surgery in July 2023, but has since had complications. For the month of September she has been hospitalized for 2 weeks undergoing tests after tests to determine what the complication is and to find out what is making her so sick. The doctors believe that she developed strictures and had to operate on her to fix this complication. She is slowly recovering from this surgery but is still very weak and may need more medication with the possibility of reverting to a stoma. There is no telling with this disease as it's highly unpredictable, especially in a child. We have tried our best to manage Sofia's disease as best as possible but today we are opening up and sharing this story with you because WE NEED YOUR HELP! Sofia will be staying in New York for an extended period to make sure that this complication is fixed and managed properly. Your contributions will be used for food, clothes and travel to and from doctor appointments and any out of pocket medication. If you are able to help or contribute in any way possible we would really appreciate it. Thank you so much for reading!