Hey all, I’ve been contemplating whether or not creating a GoFundMe during times like these, especially with the economy right now, is appropriate or even fair to ask for help. I am a person who’s very aware that things could always be worse. But this past year, specifically the past few months, have been very hard on me and Peyton, and we could really use some help, any help really. To explain Peyton’s story:
- As many of you already know, Peyton was diagnosed with Autism in 2024 and shortly after, ADHD. After being diagnosed, she went through some traumatic events with the public school, all while being denied an IEP. I decided that the restraint at school couldn’t continue, especially given her diagnosis of chronic ITP in 2021 (a platelet disorder that puts her at a higher risk of bleeding), and that homeschooling was the best option for her needs. Being a single mom while homeschooling and trying to maintain a job to stay above water is extremely hard, to say the least.
- Peyton started experiencing increased joint pain that had been mentioned in the past but continued to be more concerning, along with changes in her appetite and chronic fatigue with some other odd symptoms. We started with many lab tests and appointments with rheumatology, neurology, allergy, GI, and her hematology team. Her labs had some abnormal levels pointing to the possible beginning of an autoimmune condition but not enough to diagnose with. Then I pushed for genetic testing.
- We found out that Peyton has a rare genetic mutation in her LRRK1 gene. When this finding came back, the doctors at Children’s didn’t seem concerned given how rare the bone disease that can be associated with it is. So X-rays were ordered to err on the side of caution, with an expectation of no concerns.
- In August 2025, the radiology report came back with increased sclerosis along the distal femoral, proximal/distal tibial, and fibular metaphyses. The doctors at Children’s confirmed the diagnosis: Osteosclerotic Metaphyseal Dysplasia due to a rare LRRK1 genetic mutation. After a bone scan, we found that she has changes in her long bones in her arms, legs, and the base of her skull.
If you’ve made it reading this far, thank you because I know it’s a lot.
OSMD is so rare that the specialists aren’t sure what Peyton’s future will look like. They are unsure if the disease will progress, if things will get worse, if she will struggle with repeated fractures and continued chronic pain. They do know that she is at an elevated fracture risk and increased risk for injuries to cause osteocysts that can cause bone infections to develop rapidly. This all means that Peyton and I continue to have a long journey of doctor appointments with teams of multiple specialists, ER visits, and traveling costs to Children’s National in DC.
Peyton’s needs severely impact my ability to maintain full-time work hours, and recently I’ve had to decrease to part-time hours due to lack of care for her.
If you feel generous enough to donate to Peyton and me, the funds will go towards our monthly costs of living that have been piling up and to travel costs for her doctor visits. We greatly appreciate our community of support. It truly takes a village ❤️
Organizer
Abby Depaul
Organizer
Lusby, MD