Lessons on Raising Children with Dwarfism
Rebekah and Chris were both born with Achondroplasia, more commonly known as dwarfism. They are married and have two children, their son Ryan—who does not have a dwarfism diagnosis, and their daughter Ella–who does have dwarfism.
Knowing the dwarfism diagnosis intimately, Ella’s parents celebrate her differences. She can be herself and feel normal in her home. “We don’t treat her any differently than her brother,” Rebekah says. “I just want to raise a competent child who knows who she is. Dwarfism is a part of her, but it doesn’t define her.”
Advice for Parents who Receive an Achondroplasia Diagnosis for Child
When they decided to have kids, Rebekah and Chris wanted to know how likely it was that their children would have dwarfism. The doctors said that there was a 25% likelihood of their children not having dwarfism, a 50% chance of them having dwarfism, and a 25% probability that they would have a severe dwarfism condition that would result in them not living long after birth.’
“We found out at 26 weeks that we were having an Achondroplasia dwarfism child just like Chris and me, and we were excited,” said Rebekah. Chris worried when he received the news about Ella because he had been made fun of as a child and didn’t want his little girl to have to go through that. Rebekah also missed out on friends not calling her to play in large group settings because she was different.
Rebekah and Chris’s dwarfism came from their own parents, who helped them in many ways learn to cope with their differences.“I think what our parents did best was helping us understand who we are, living with dwarfism and knowing that we were the ones who defined who we are and not the people around us.”
“Little People of America” is another valuable resource for Chris and Rebekah. Each of them was given a mentor with dwarfism to teach them some ideas to maneuver their diagnosis. The mentors helped Chris and Rebekah and Chris understand dwarfism on a deeper level. Giving them the chance to talk with other families who had children with Achondroplasia.
Teaching People about Achondroplasia
When Ella was a baby, people would come up to Chris and Rebekah and want to see their daughter in the stroller. It was hard for Rebekah when all they wanted was to see what Ella looked like rather than understand the diagnosis that she had.
Rebekah teaches other people about people with dwarfism. She knows people often shun or stare at people who are different, but only because they lack understanding. “I love it when the parents or the kids ask questions [about dwarfism],” Rebekah says. “I find that when the parents don’t explain what’s going on [to their kids], it gives them a fear of that difference.”
Through their dwarfism, Rebekah, Chris, and Ella are showing others that appearances are not important. In a time where understanding people is what matters most, Rebekah, Chris, and Ella are paving the way.