mission statement
〰️
mission statement 〰️
Colbie's Compass is a nonprofit organization dedicated to creating inclusive play spaces and opportunities for children of all abilities in Indiana. Our purpose is to ensure that every child has a place to play, connect, and belong by supporting accessible environments, building community partnerships, and promoting awareness of the importance of inclusive recreation for healthy childhood development.
Our why
Hello All!
My name is Ashley Gibson. I am your average Mama turned medical mom overnight. My daughter Colbie was diagnosed with CRELD1 on Friday, September 13, 2024, at 8 months old…the day our lives changed forever. She is 19th in the WORLD with this genetic condition… a number that to this day makes me cringe but has huge significance.
CRELD1 is a condition that brings a whole list of medical complexities. We are talking intractable epilepsy (difficult to nearly impossible to control/treat), cardiac conditions, developmental delays, metabolic issues, neuromuscular mysteries, hearing and vision impairments, and immune mediated anomalies. In just 2 years of having a diagnosis for our daughter, the CRELD1 community (~37 children total) has lost three children.
This is not ok.
Parents and family members around the world are uniting, standing, fighting and fundraising to keep our research a full-time project that has already begun in the UK. Colbie is joined by several others sending skin biopsies to Dr. Felix Chan in the UK in hope of finding the underlying mechanism for the CRELD1 condition.
Like other families living with CRELD1, I put life on hold during the last 2 years to personally seek and implement the best care teams and treatment plans I could find in the US. In February 2026, Colbie was the first CRELD1 child to have brain surgery called Corpus Callosotomy. She has seen MIRACULOUS improvements with her epilepsy since; bringing her from having hundreds of seizures daily to one every 1-2 months.
Now that life is a smidge better, (not rescuing her life up to 3 times weekly and rushing to the ER constantly), I have established a non-profit called Colbie’s Compass, Inc. with two goals: 1-Design and build an inclusive playground in Union County so that no child is left on the sidewalk. 2- Raise awareness and funds to send to the UK to find a cure or treatment for CRELD1. After putting life on hold for 2 years and not experiencing the things I once loved, I realized it is not ok that children in our community cannot experience life in certain ways, like playing with their peers. My vision for this space is extensive as I want to give children of ALL abilities the experience of FULL INCLUSION. This looks like swinging, spinning on a merry-go-round, climbing to the top of a play set, communicating with others through a communication board nearby, experiencing musical sounds through sensory stations, hearing a nearby fountain for relaxation, and so much more.
With this vision in mind comes a big, but not unreachable financial goal. I need your help. I am seeking sponsorships, donation matches, partnerships, grants, and most of all, prayer and support. I cannot do this alone, and I believe Liberty, IN, can be the starting point of something powerful and impactful on both local and global levels.
So, what do you say: Are you with me?!
Forever advocating and loving children everywhere,
Ashley Gibson
Colbie’s Story.
Colbie was born January 3, 2024, full term with a completely normal pregnancy, labor, and delivery. She weighed almost 9 pounds and had a typical, short hospital stay postpartum.
At just 4 months of age, sweet Colbie started having movements that quickly escalated to 60-85 daily. After calling a local pediatric hospital, we were told to come in immediately for a 24-48 hour EEG to verify if these twitching/jerking movements were indeed seizures. We did the test and went home to later be called and told that these were myoclonic seizures, and she was prescribed Keppra, a widely used antiepileptic medication. We were assured that she would need to be on this medication for two years and that she had a 90% chance of outgrowing these juvenile seizures. This couldn't be further from the real truth of her story.
Like all parents in our CRELD1 family, we knew something more was at play. I quickly requested a second opinion at a different pediatric hospital, and we were put on a fast track to genetic testing. Our answer came at 8 months of age....."Your daughter has CRELD1, and she's only the 19th in the world with this. She may be nonverbal, nonmobile, there is no life expectancy, and only one published research paper covers this condition." Words none of us were ever prepared to hear. This was an unbearable report; however, we picked ourselves up and got to work.
Just 2 weeks later the Emergency Room visits started. Every sickness Colbie got would start a status epilepticus that was too strong for our 3 rescue medications to stop. These ER visits were far too frequent. Between performing life saving measures, that became our norm, life had to go on.
Colbie has intractable epilepsy with 5 different types of seizures. She has hypotonia, global developmental delays, dystonia, a CVI, gtube, feeding difficulties, had lasered tongue and lip ties, and she was born with severe torticollis and corrected plagiocephaly with helmets and therapy. She receives PT, OT, SLP, Aquatics, DMI, Hippotherapy, craniosacral, laser therapy, and chiropractic care.
Colbie was recently (Feb 2026) the first CRELD1 child to face a brain surgery called Corpus Callosotomy. She did very well, and we are extremely impressed with the improvement following her procedure. The surgery is only expected to help two types of her seizures so there will be plenty more searching and treatment to come.
Despite all of her medical complexities, Colbie endures. She inspires everyone around her to work hard, stay focused, get back up and keep trying!
Colbie enjoys music, books, and admires her big brother. She likes to be outside, listening to birds and laughing with the family. Her favorite animal is a horse, and her favorite foods are cotton candy flavored yogurt and toddler puffs. She's currently working HARD to be on the move!
Colbie has changed our lives for the better. I believe sometimes things don't happen to you, they happen FOR you. In just two years of life, our story has been more miracle filled and faith based than I ever imagined it being.... thank you Colbie for teaching us this way of loving and living.
