Agnes

Age 2, Maine

Meet Agnes. Agnes has defied so many odds and is such a funny little girl! She LOVES playing pretend and laughs so hard at peek a boo. She recently learned to crawl and got her first wheelchair and she's on the go! She LOVES going for hikes and walks and splashing in water. Agnes was born with a rare condition called OEIS Complex (her bladder and bowels were outside her body when she was born) and has a colostomy. She also has a very rare form of Spina Bifida called terminal myelocystocele. In her first years of live, Agnes endured months of hospital stays and 9 surgeries. Her family travels to Boston Children’s Hospital every few weeks for appointments and imaging. 

Agnes’ mom Molly says: "If there were cuts to Medicaid the healthcare costs for Agnes would be so incredibly high. We’d most likely have to leave her current medical team and her care wouldn't be what she needs to thrive. If protections for people with pre-existing conditions change necessary healthcare for our daughter would no longer be accessible. She requires very acute specialists to maintain her quality of life.” 

Submitted by Molly, Agnes’ mom.