NORTHEAST Ohio — Rachel Malec loves being a mom to 4-year-old Roman, but it hasn’t always been easy.
“We went from planning a first birthday party to brain surgery,” Malec said.
At 11 months old, Roman was diagnosed with hydrocephalus, a condition caused by excessive fluid in the brain.
One out of 770 babies will develop the condition, according to the Hydrocephalus Association.
“I just slowly started losing this precious, perfect baby that I had,” Malec said. “I wish I could go back and tell that young mom, that brand new mom, that you’re strong enough.”
Malec raises awareness about hydrocephalus through Hope for Hydro, an organization she said she was inspired to start after her son’s diagnosis.
Now, Malec works with Roman daily to improve his fine motor skills.
She said Roman sees several specialists and undergoes an MRI yearly.
“Roman, right now, is doing really well,” Malec said.
Malec said thinking back on Roman’s health journey makes her emotional. She said she found support online with the greater hydrocephalus community.
That’s how she met Jecika White, a mother in Cleveland whose son has the same condition.
“We wanted to get the boys together to support each other and to let them know that they have other people out there like them,” Malec said.
Now, Roman and his friend, 5-year-old Zaylen, enjoy playdates together.
The friendship between the women is growing too.
At a playdate, at the park, Malec said, “I can’t come here with another parent that hasn’t been through it and be like, ‘Oh, my kid’s moving both of their arms.’”
White said she’s also thankful for Malec’s support.
She said at one point, Zaylen wasn’t able to walk, talk, eat or drink on his own.
“She was just a shoulder to cry on,” White said.
Now, both women said they are proud of their son’s improvements and of each other.
If you’re interested in learning more about Hope for Hydro, click here to visit their website.
