Support Ameer's Journey to Transplant Recovery

Hi, my name is Domenica Angel, and I am trying to raise money for my grandson Ameer because when he receives his transplant my daughter and her family of 6 will have to relocate to another state for at least a year to remain close to the transplant facility.

Ameer was diagnosed with Gastroschisis in utero resulting in vanishing gastroschisis at birth. When he was born, he underwent surgery which resulted in them resecting a small portion of his large bowel and a large portion of his small bowel, for which he was then required to have an ostomy bag. They reversed the ostomy when he was around 8 months old. After the vanishing gastroschisis, he was left with the final diagnosis of Short-Gut Syndrome, every Short-Gut Syndrome circumstance is unique depending on the amount of bowel left. Ameer unfortunately currently requires 20 hours of IV nutrition, that are delivered through a CVL (Cardiovascular Line) that is run through his jugular vein directly to his heart. Through his CVL line, he receives TPN (Total Parental Nutrition) and Smof Lipids. He also has a G-Tube where he receives supplemental nutrition and any oral meds. This G-tube is placed because our small bowel is our primary source of absorbing our nutrients, due to Ameer’s lack of a small bowel we must deliver any oral meds or feedings by G-tube, so they go directly to his stomach. Currently, Ameer is off any G-tube nutrition due to an increase in the dilation of his bowel. When the Bowel dilation gets worst it slows the output which would be referred to as poop for us, but his poop is more acidic which is the equivalent of diarrhea. Bowel dilation increases his chances of infections into his central line which requires a minimum of a 10-day hospitalization at CHOA (Children’s Hospital of Atlanta). He is about to undergo his next extensive surgery called the STEP Surgery (also known as Step-down Procedure). This surgery will hopefully lengthen his small intestines resulting in more narrow and useable space to allow for the food to move through the digestive tract at the right pace. This will hopefully reduce the amount of infections, and prolonged hospital stays, and reduce the time of usage of TPN and Smof as it can damage the other organs and result in other transplants being needed. Through all this Ameer has been so amazing despite all these challenges he is always happy, and you would never guess he goes through this daily. He spent the first 2 ½ months of his life in the hospital, and in and out of the hospital numerous times due to infections, and CVL breaks. He goes through weekly dressing changes, and medications multiple times a day, and carries a backpack all day that holds his pumps and his IV bags. Although he does not have the same privileges as other kids do, he continues to thrive considering his challenges and overcoming the obstacles.

Our family greatly appreciates any assistance that is given to help fund us to be able to move to another state for a year. As it will continue to enable us to reciprocate the joy Ameer brings us, and keep our family together. #Shortgut,  #Transplant, #Gastroschisis