When Chris and Alicia Stier brought their daughter, Cora, home to Falcon after she was born, they knew they would need help. Born with a rare congenital syndrome, macrocephaly capillary malformation, affecting her vascular system and cranial development, Cora is one of 40 to 50 known cases in the United States. She also falls into the 30 percent of M-CM patients with seizures.With support from her husband and an army of doctors and therapists, Alicia is Cora’s primary caregiver. For nearly three years, Stier said they were able to control Cora’s seizures with medication, allowing her to make developmental progress, including feeding herself with a spoon and sitting independently.In September of this year, Cora took a sudden turn for the worst, with her seizures increasing over a two-week period and medication failing to provide relief. Stier said an EKG at The Children’s Hospital in Denver revealed the right side of Cora’s brain was seizing every three seconds.Because it appeared the seizures were only coming from the right side of Cora’s brain, the Stiers decided to proceed with a functional hemispherectomy – a surgery that removes a portion of the right brain and separates the remainder from the left side.”They leave enough of the right side in to structurally support the left side. Then they literally sever all the nerve connections to the left side,” Stier said.Going into the surgery, Stier said her biggest fear was losing Cora’s personality and developmental accomplishments. “I didn’t know what part of her was in that right side. Are they going to take that out, am I going to lose Cora, and who she is? One of the things that gave me hope was (Cora’s doctors) felt that the right side was so malformed that she’d probably transferred a lot of the processes over to the left side and was already compensating for it.”The doctors were right and Cora is now recovering from the surgery. She recognizes her parents and is regaining movement on her left side. Although she is still having seizures in her left brain, Stier said they are controlled with medication.Over the years of caring for Cora and through this latest surgery, Stier said she relies heavily on a good support network. She participates in an online community for M-CM and recently discovered the Hemispherectomy Foundation, a Web site dedicated to families impacted by brain surgery.”Even though each kid is going to do their own thing, it’s nice to see the (developmental) range that you are looking at,” she said.After Cora was diagnosed, Stier connected with a mother in California whose son also has M-CM. “She is like my sister I met two years ago. We talk about getting together and having a big M-MC reunion,” she said. Stier said she also gives support to a new mom of 19 whose daughter has M-CM and also experiences seizures.Stier said the association with families with special needs children allows her to talk more freely. “It’s like being part of these exclusive clubs that you don’t really want to be a part of.”She said she likes to swap advice about what works and how to create the best quality of life for her daughter.Although there are no other children with M-CM in the immediate area, Stier said she also reaches out to moms of children with a variety of medical conditions. They meet together monthly, usually over snacks, crafts and a whole lot of discussion.Although each family is dealing with different challenges, Stier said the lifestyle of caring for a special needs child is remarkably similar. It helps to relax, use acronyms, talk about therapists and the stress of fitting in doctor’s appointments around the demands of everyday family life, she said.In addition to their special needs children, these mothers have other children who need help with homework, carpools to afterschool activities, clean clothes and dinner on the table. The extra time constraints of a special needs child make all of these duties harder to complete, said Stier, who also has two young boys.The biggest benefit to the monthly meetings is not feeling like a burden to other people, she said. “We’re high maintenance. It’s hard to be friends with us,” Stier said. With moms in similar boats, she said it’s easier to unload the stress and frustration.Holly Richards, whose son was diagnosed with autism two years ago, attends Stier’s group. “Having support allows me to vent to people who understand. I feel like I can say anything and no one’s thinking I’m a bad parent,” Richards said.”I don’t know what I would have done without this group,” Rachel Egbert said. Her son was born with Down’s syndrome and she said it has helped to meet regularly with moms struggling with similar issues.Stier said she welcomes new members to their group. Recently, while picking up her kids at school, she approached a mom in the school parking lot and invited her to join the group. “To me, the more the merrier.”For more information about Stier’s monthly meetings, e-mail her at alicia@mummyhead.com. Information about resources for families of special needs children can be found at The Peak Parent Center (www.peakparent.org) and the Resource Exchange (www.tre.org).
