Meet Sara: 2020 Family Advocacy Week Champion
Sara is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Sara and her family will share information about her health journey, Yale New Haven Children’s Hospital’s role in providing Sara with necessary health care services, and why the public and our elected officials must invest in the future of kids like Sara.
Sara was diagnosed in utero with megacystis-microcolon-intestinal hypoperistalsis syndrome (MMIH), a severe disorder that affects the muscles that line the bladder, intestines and disrupts the digestive tract.
MMIH is a rare syndrome with roughly 200 cases known worldwide.
After years of unsuccessful treatments, Sara, now 4 years old, had ileostomy surgery at Yale New Haven Children’s Hospital, in New Haven, Connecticut, and now has an external ostomy system.
“We are lucky to have private insurance through my husband's job, and Medicaid as secondary insurance,” says Maria, Sara’s mother. “We are so thankful as we would never be able to pay for the special medication Sara receives. The cost of her medical care has surpassed $2 million.”
She has been hospitalized dozens of times for her condition. Only a handful of doctors in the U.S. can provide her current treatment, so Sara and her family have had to travel to Boston frequently.
“Our lives would be very different if we did not have Yale New Haven Children’s Hospital,” says Maria. “Having the hospital and specialists close by has helped our daughter's chances at surviving this rare syndrome.”
Today Sara is stable, but she is still often hospitalized for long periods of time due to complications from MMIH. She is a strong, intelligent 4 year old who’s favorite activity is playing with her dolls.