The Gilmer Family

6-month-old Aubrey Gilmer was struggling to meet milestones as an infant. Her parents, Megan and Benjamin, were concerned and seeked advice from her doctors. The family kept hearing “she’ll grow out of it” until one specialist discovered a dimple on Aubrey’s bottom. The dimple was a marking from a tethered spinal cord. The specialist believed this was causing her delays. Aubrey underwent surgery to correct the spinal cord but afterwards, was still having some growing troubles.

Before the surgery, Aubrey had already completed genetic testing. Eventually, the family received news that Aubrey had a rare mutation on her 9th chromosome called STXBP1, a rare genetic disorder. At the time she was diagnosed, there were only around 200 cases. The Gilmer Family was told that Aubrey would probably never walk or talk. Medical professionals recommended therapy for her to have the best life possible. The Gilmer Family immediately jumped on board and started therapy at home 5 days a week with Aubrey in Anderson, SC.

Mom, Megan, joined a Facebook page with other STXBP1 families and learned about intensive therapy. This type of therapy is around $8,000-$11,000 with no insurance coverage, but they knew it was what Aubrey needed. Aubrey, now 4 years old, their community, family, and friends fundraised money for her to have intensive therapy. Their family is overwhelmed with the amount of donations and support they received. They would not be able to provide therapy for Aubrey without that fundraising.

Aubrey’s sister Riley, 2 years old, has been with the family staying at the Ronald McDonald House. “She is her sister’s cheerleader and takes pompoms to cheer on Aubrey at therapy.” Riley likes to tell people that her sister is “in training”. “Financially it’s been a huge blessing. We loved seeing the staff and volunteers every day.” “We would have tried to have our entire family together, but I don’t think our family would’ve been able to be together without staying at the Ronald McDonald House because of space and cost. My sister, Aubrey’s aunt, has visited and helped with daily tasks while we’ve been here as well.”

After 21 nights, the Gilmer Family headed home and is ready to start planning their next visit for Aubrey’s intensive therapy after seeing tremendously positive results. Heading to Charlotte, she could only stand for about a minute and take a few steps. Leaving Charlotte, she can now stand for long periods and is able to walk across a room! She is proving everyone wrong! The Gilmer Family wants to extend their gratitude to Neurological and Physical Abilitation Center and RMHC of Greater Charlotte.

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