Risha

At age 3, Risha was traveling with her parents and little sister (shown here on the right with her little sister) to Amsterdam and India for 10 days.  On the way there, she became sick and started vomiting and had severe diarrhea.  Risha’s parents thought she had the flu, so they waited for a few days in Amsterdam for her to get better.  However, Risha didn’t get better.  Therefore, she was given a drug by a pediatrician in India for traveler’s diarrhea that helped her get better, and the family proceeded with their journey.

A few weeks after returning from India to the U.S., Risha started complaining that her “tummy” hurts.  She was given an antibiotic.  However, the episodes of pain continued.  Without warning, she would be doubled over in pain.  After one month, she was diagnosed with chronic pancreatitis.

Chronic pancreatitis is uncommon in children.  Normally, the pancreas secretes enzymes that help digest food in the small intestine.  The pancreas also releases insulin and glucagon that helps convert food into energy.  With pancreatitis, the enzymes that the pancreas secretes become active in the pancreas (instead of in the small intestine) and start to digest the pancreas itself.  This causes inflammation and severe pain in the pancreas.  Eventually, the pancreas can destroy itself, resulting in type 1 diabetes.

Until the age of 7, Risha lived with pain every day – sometimes it was mild, other times it was so severe that she would vomit.  She made many trips to the hospital.  At the hospital, doctors put her on heavy pain medications (including morphine) and fed her intravenously.  Over time, it became too traumatic for Risha to go to the hospital, so her parents began treating her at home under the guidance of their doctor. 

She started getting her IVGTT tests (IV Glucose Tolerance Test) done every year to monitor her insulin production.  When her insulin production dropped to less than half in one year (based on the IVGTT test results), as well as her pancreas rapidly deteriorating from calcification, consultations were made with several doctors and surgeons across the country as to what to do.  Based on the joint consultations, the decision was made to proceed with a partial pancreatectomy and auto islet cell transplant surgery under Dr. Sutherland’s care.  It was also decided to not perform a Whipple procedure, since there was a significant risk that her pain would not be reduced, and also would not stop her from becoming a brittle diabetic within a few months. 

In March 2004, Risha underwent a partial pancreatectomy and auto islet transplant at the University of Minnesota Medical Center, a division of Fairview (formerly called Fairview University Medical Center).  Dr. David E.R. Sutherland removed about 2/3 of Risha’s pancreas, as well as her gallbladder and appendix.  There were complications; pathology results after the surgery showed that she had several rare microcarcinoid tumors in her appendix.  After the surgery, Risha was treated like a type 1 diabetic in order to preserve her newly transplanted islet cells, so she takes 1-3 insulin shots a day until she is done growing up.  The family is extremely pleased with results so far.  

Initially, the family’s insurance company did not agree to cover the hospitalization and transplant expenses.  So, the family and volunteers within their own community raised money for Risha’s surgery with the assistance of Children’s Organ Transplant Association (COTA).  After much persistence by Risha’s mom, the family’s health insurance company finally agreed to cover the surgery.

In November 13, 2004, Risha suddenly developed severe joint pains with inflammation, eventually spreading everywhere on her body.  She underwent numerous lab tests, x-rays and scans, and visited 14 different  medical specialty physicians, before finally going to the Mayo Clinic.  No one was able to figure out the cause of this pain that actually incapacitated her at times.  During that time, she was taking 28 pills a day.  With no conclusive diagnosis, she was eventually diagnosed with Chronic Pain Syndrome.  She started feeling better again in March 2005 and we hope that she remains well!

Despite all this, Risha has a great attitude and still gets A’s at school.   Even though the auto islet transplant was only able to successfully harvest a third of her islet cells, her diabetes is doing great most of the time.  According to Dr. Sutherland, she will need to continue on her insulin dose for several years, just to be on the safe side, since there is not that much research available for her age group.  She was the first child of her age to have this type of surgery, in March 2004.  So, if her transplant is successful, with her pancreatitis pain eliminated and her blood glucose in control, it opens the door to a lot of other children with a similar condition.  There is a small possibility that she may need to get the rest of her pancreas removed and have an auto islet cell transplant again, if her pancreatitis pain does come back and gets worse.    

Soon after the surgery, when Risha felt much better, she and her little sister (see photo) started the Kids Who Care Foundation.  Risha came up with the idea when she was in the hospital.  She had received a large get well “Quilt Card” during her hospitalization, and it really cheered her up.  She thought that if other really sick kids got a giant “Quilt Card” like she did, it would cheer them up as well.

Risha’s parents are very supportive of their daughters and share their passion to help others who may be suffering from pancreatitis.  Together, they have created the Kids Who Care Foundation, which: 1) Helps increase awareness of this disease by creating an online support group for pancreatitis just for kids; 2) Brings a smile to a sick child with the giant get well “Quilt Cards;” and 3) Allows parents to write and maintain an online journal to keep friends and family updated on the sick child’s progress.  For more info, visit www.kidswhocareclub.org.

Risha also recently won a Service Award from her city in April 2005.  With the help of community kids, her foundation has sent out over 1000 cards, i.e. over 50 “Card Quilts” to kids across the country.  Her family hopes that kids all across the country will start the club to bring thousands of smiles across the country.