Support Amelia's Recovery After Spinal Cord Injury

Prior to Amelia and Mabel’s birth, we learned during an ultrasound Amelia had a heart defect which would require open-heart surgery. In the midst of meeting with cardiologists and surgeons to develop a game plan to fix the defect, Mabel and Amelia had to be delivered much earlier than expected at only 30 weeks. The delivery had many complications and, as many of you know, Amelia suffered a spinal cord injury (SCI) during birth which permanently paralyzed her lower legs.

Although her heart surgery was an astounding success and she quickly recovered, the injuries she sustained from her SCI cannot be fixed. We have spent the last 18 months processing, researching, reconfiguring our ideas of what the future looks like, and building a care plan for her with an amazing team of doctors and therapists. Babies with SCIs are extremely rare, and it's impossible to predict what the future holds as every spinal cord injury is different. Her diagnosis was to expect her to grow into the happiest squishiest sweetest kid with the cutest laugh who just happened to be non-ambulatory.

After healing from her heart surgery, we began a full-time physical therapy schedule to help her become as comfortable in her body as possible. A few weeks after her first birthday, she was fitted for orthopedic braces for standing therapy. She’s crossed a lot of milestones - using braces she is now able to stand, squat, and even kicks soccer balls (vamos, vamos, Argentina!). She is as strong as she is sweet, and the progress she's made has blown her doctors away.

Based on her unexpectedly huge accomplishments in physical therapy, there is new optimism amongst experts that she will be able to walk someday using braces. She has put in hundreds of hours of hard work to achieve this and we couldn’t be more proud of her.

Amelia was recently accepted to The Kennedy Krieger Institute, a John’s Hopkins affiliate that specializes in treating pediatric spinal cord injuries. At their intensive inpatient rehab program, she’ll receive 4-5 hours of therapy services per day to help her make as much progress as possible during this crucial time in her early development. This rigorous therapy program will require our entire family to fly out to Baltimore and spend 4 weeks away from home.

This is a great opportunity for her, but another extreme challenge for our family. It’s already been an incredibly expensive journey with medical bills, the inability to work full-time, a growing list of out of pocket expenses including specialized therapy and medical equipment not covered by insurance or MediCal, and now long-term travel thrown on our plate.

We have set a fundraising goal of $30,000. For transparency, in 2024 alone, we spent over $20,000 on out of pocket expenses related to her injury. We have been hesitant to ask for help as we know so many others are struggling, but we realize any support we get will alleviate some of the enormous pressure off our family since many of these expenses will be ongoing for the rest of her life.

Thank you so much for taking the time to read or share - and thank you to everyone who’s continued to check in on us.