April 23, 2018 was a day that Megan and James will never forget. It was the day that their baby, Rose, was diagnosed with Spina Bifida.

Their doctor said Rose would have physical limitations, would probably never walk, and her quality of life would be poor. That’s all the information they were provided.

“I was heartbroken,” says Megan. “We had suffered a previous loss, and the thought of losing another baby was something I couldn’t handle. The next few weeks were a struggle. There were constant tears and anger…why us?”

Megan and James didn’t have a Spina Bifida clinic in their state. They had no experienced medical professionals to turn to for answers. They spent weeks researching as much as they could, while also living in the uncertainty of not knowing what Spina Bifida would look like for Rose.

Megan and James eventually were connected with a team of surgeons, nurses, and supportive staff who helped them realize that life with Spina Bifida is not a death sentence. Living with Spina Bifida would be different, but it would be ok. 

Like you, we have dreams. We dream of a world where no parent receiving a Spina Bifida diagnosis will feel the fear and uncertainty that Megan and James felt. We dream of a world where every family and person will have access to a team of Spina Bifida experts.

The information, resources, and support services that SBA provides can change lives. We strive to take frustration and uncertainty and meet it with support, assistance, and assurance.

Help deliver life-changing information to new families by making your gift today>>

Rose is now a joyful, adorable child who enjoys doing just about everything. “Every time I see her smile,” Megan says, “I just can’t believe I get the privilege to be her mother.” They have dreams for her future too.

“The work that SBA does to raise awareness and money for research is extremely important,” says Megan. “We want Rose to have the world. We believe she can because there are organizations like SBA out there, working to ensure that there is medical care available for her as she becomes an adult.”

People like you help create a brighter and better future for everyone in the Spina Bifida community. Help us change the future by making a gift today.