Leia-Grace's Story

Leia-Grace is our next Spina Bifida warrior. Leia-Grace was born at 38 weeks and 2 days. The family is based in Scotland, UK. Leia-Grace had a repair operation immediately after birth, at 1 day old; she had a shunt placed at 4 days old. (Thankfully, no revisions)

Her mother lovingly documents Leia-Grace's activities on her Instagram account: @leiagrace_sbwarrior

​Read a Q+A from her mother below.

What advice would you give to a parent who received a spina bifida diagnosis for their child?
Yes, it is daunting and emotional when you receive the diagnosis. They will say "termination" as a first option and always give you the worst-case scenario. But please reach out to a local Spina Bifida Group or association, talk to them and individuals and their families, as even though everyone is different, they will have similarities. It's not always an easy journey, and there can be some complications and medical intervention/equipment, but most SB people I met, especially kids, are always so happy, determined, and willing

What have been some of the biggest surprises (positive or challenging) about navigating life with spina bifida?
Leia has been able to reach milestones that they said she would never be able too ie crawling, standing, walking using mobility aids; she started walking independently (AFO & Twister Cables).

What is something you wish more people understood about Leia-Grace and your family?
Even though she does have some challenges, she is still a typical human/child who enjoys the same activities as her peers and being included. And as a parent, yeah, I do have extra tasks, but we are a "Typical" family doing our best to get through life as everyone does.

What makes Leia-Grace most happy and confident?
Leia-Grace is so sociable and loves being around people at nursery, in her child/toddler groups, and when she achieves goals/milestones, people cheer her on and are proud.

What do you want the world to know about Leia-Grace?
Yes, she does have some hurdles: hospital visits, medical equipment, and things that she may struggle with. But no matter what, she is still like everyone else; she wants to be included. It’s not that hard to adapt things to include everyone and be kind and supportive!

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“But no matter what, she is still like everyone else; she wants to be included.”

Visit @leiagrace_sbwarrior to support her page.

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