Join Chloe's Battle to Fight Back Against Dejerine Sottas

With heartfelt pleas from the caregivers to a baby warrior, we humbly ask for support for our brave daughter, granddaughter, niece, and cousin. Chloe is facing an incredible battle against Dejerine-Sottas. This rare neuromuscular disease affects just 1 in 2,500 people in the U.S. (By July 2025, the U.S. population is estimated to be approx... 347 million). This means that Chloe is among a very small group of individuals facing unique challenges, and she needs our collective help now more than ever.

Recent Medical Complications and the Financial Strain

On January 28, 2025, Chloe underwent a hardware removal surgery following a previous spinal fusion with a halo. Unfortunately, complications from this procedure led to an unexpected 34-day hospital stay, introducing additional physical and emotional hurdles. Despite her resilience, Chloe was discharged without the necessary support and resources to help her regain her strength and reach her baseline. The hospital has limited its response to “investigating” the issues she faced under their care and has declined to meet with our family, suggesting a “grievance” process instead.

The High Cost of Essential Home Healthcare Services

To continue her recovery, Chloe requires critical therapies, including occupational and physical therapy, which her medical insurance has repeatedly denied due to the lack of support from the medical team that provided her services. These therapies are vital for her rehabilitation and will provide her with the support she desperately needs. Unfortunately, accessing these services independently imposes a significant financial responsibility.

In Maryland, the median hourly rate for home health aide services is approximately $35, leading to an estimated monthly cost of $6,436 for 40 hours per week of care. This financial responsibility is substantial and beyond our current means, but ABSOLUTELY NECESSARY which complicates our steps forward.

Necessary Home Modifications and Their Financial Implications

In addition to ongoing care, Chloe’s home requires significant modifications to accommodate her needs and ensure her safety. These modifications include widening doorways, installing ramps, and adapting bathroom facilities to be wheelchair accessible. The cost of such comprehensive home remodeling projects can vary widely based on the specific modifications required.

How You Can Help

We are launching this GoFundMe campaign to raise funds to support and supplement Chloe’s ongoing therapies, rehabilitation efforts, and necessary home modifications, simultaneously raising awareness of this and many other rare conditions. Every contribution, no matter how small, will make a meaningful difference in her life and help her regain the strength and independence she deserves.

Chloe’s Aspirations and Our Collective Hope

Chloe is a sophomore with high hopes of applying for early graduation and beginning her college journey, God willing, in 2026. We believe in a higher power, and when “man” says “no,” we watch her go harder!

Thank you for taking the time to read Chloe’s story and for your support during this challenging time. Together, we can make a difference and help Chloe continue her journey towards recovery. We are truly grateful for your kindness and generosity. Please help us give Chloe her smile back, her sense of identity, and security that she will be okay!

Many Blessings, Peace, & Love,

The Village