Hi everyone! I'm Camille, mama to a beautiful 6 year old girl named, Maycie. We are reaching out for support from the community to help our girl learn to walk. I'll start with a bit of Maycie's history and explain why we're asking for some financial help.

My pregnancy with Maycie was uneventful, healthy, average, nothing out of the ordinary occurred. Her birth was the same, pretty uneventful. But, the day after we were discharged from the hospital she started having some abnormal movements. I was a new mom, and newborns make very jerky movements as it is, so I wasn't fully convinced anything was wrong. Until the following day when those movements turned into full seizures. My sweet 5 day old baby girl was having seizures and my heart just shattered. We took her to the ER where they did countless tests. This sweet tiny girl had been through more tests in 5 hours than I'd had my entire life. Spinal tap, multiple blood draws, brain ultrasound, glucose tests, MRI, poke after poke after poke for more blood work. After hours in the ER they admitted her to the NICU at Randall children's hospital where we stayed for 5 days while they continued to perform more and more tests. For the first 3 days there she had an EEG and we couldn't even hold her. I had to watch my baby seize without even being able to comfort her. The EEG revealed she was having 17+ seizures per day. At first they gave us some hope that this was something she would outgrow, and they sent us home with medication and a plan of action for when the seizures spiked again. She was still having at least 5 seizures per day, but when she would have more back to the ER we'd go so they could get even more meds in her. Repeat this cycle for the first 3 months of her life. It was exhausting for us as new parents, but I can't even begin to imagine how exhausting it was for her little tiny body. After 3 months of seizures that just wouldn't ease up even after trialing multiple medications, they decided to do genetic testing, and advised us that this is starting to look more permanent after all, and the chances of her outgrowing this was becoming increasingly more slim.

Fast forward to age 5.5 months old and that's when we got the official diagnosis that broke our hearts. Our girl was diagnosed with STXBP1 epileptic encephalopathy. 1 of 400 known cases worldwide when we got her diagnosis, so it was rare enough not even the doctors could give us much information. We were handed a print out from the Internet of what to expect about this condition, because the genetic doctors didn't know enough to confidently discuss her future with us. What they did know was that Maycie would be globally delayed, she would have seizures that are hard to control even with medication, she would have movement disorders, likely never speak, and be low muscle tone. Our beautiful daughter would be permanently disabled, and there's no cure for her condition. We would have to learn to navigate this new journey with very little information from her team of doctors, since they were also just learning about her condition too.

We found a group on Facebook of parents with kiddos that have Maycie's condition, and they welcomed us with open arms. We learned so much from them. This condition has varying degrees of disability, but all of them have intellectual disability and delay, some are more complex than others, and some struggle with more intense seizures. There are now 1000 cases documented in the world but we are all still learning about this condition together. There is still no cure.

Maycie is a happy kid, and loves toys and music and her family. But She cannot speak. She cannot walk. She doesn't understand danger or have awareness of being in harms way. She functions at about a 12-18 month old mental level in a 6 year olds body. She has tremors so cannot feed herself yet. She will never be potty trained, which means diapers for life. Her seizures are mostly controlled right now, but anything can set them off.... Lack of sleep, constipation, change in routine, outgrowing medication doses, illnesses, they all can trigger the seizures. But while they are fairly controlled we have been taking advantage of it and sending her to intensive therapy.

This therapy is just as it's described... Intense. 2 hours every day for 2 weeks straight. And then once weekly until the next intensive a few months later. But what it does is train her body and brain to communicate with each other as well as strengthen her muscles and teach her muscle memory. Since starting intensive therapy in March 2025 we've seen HUGE improvements in her strength and her movements are more intentional. Since her first intensive she started pulling to stand, then that lead to standing for 5+ minutes while holding onto something. She was never able to even take steps when in her gait trainer/walker before. She would just slump down and the seat would keep her up. Now she actually takes steps in her gait trainer (with a safety band on so she doesn't fall)!! And walks about 15-25 steps with the assistance of her gait trainer! She also stood up without holding onto anything for the very first time last month! This therapy is literally changing her life!

Could you imagine being 6 and being eye level with everyone's knees because you can't make your body stand up? Or not being able to play with her brothers because there's absolutely no way for her to keep up with them when she's crawling and they're running? Which is why we're asking for your help now...

Maycie's therapy is $7,500 per year even after insurance. We desperately want to keep her going because we've seen the major progress since starting her in this therapy. We want her to be able to walk on her own, and I know if we keep her going to her intensives she absolutely will get there. But it's not feasible for us financially right now. We both work. We sold our quad and our cannon camera. We held a garage sale and have sold random stuff online. But it's just not enough. With having two other kids (one that has to have tonsils and adenoids removed - which is costly also), a mortgage, a car payment, utilities, gas, and groceries, all her medical appointments, we just can't find the money to keep her going in the therapy she desperately needs. I hate asking for help. I'm embarrassed to even need to post this, but I would do anything for my children, so I'm putting aside my pride and reaching out for some assistance.

I just want my daughter to be able to live as normally as possible. She will always need her wheelchair, as her energy will burn much faster than a typical kid, but even if she can just walk to the car from the house, or take a walk with her family on a summer evening that would change our world. I just want an ounce of normalcy for a little girl who works harder and is stronger and braver than anyone I know.

Please consider helping Maycie learn how to walk. Even sharing this to help spread the word would be amazing. Anything helps! I appreciate you reading her journey!

Thank you from the bottom of our hearts!

-Austin, Camille, Mighty Maycie, and little brothers August and Benson