In Support of Jolene Sloan

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Jolene is three years old, and she is pure sunshine. đź’›
She’s always smiling, always happy, and deeply loves people, music, and connection. Jolene has a gentle joy that fills rooms and draws people in. She is a light wherever she goes, and everyone who meets her feels it. 

After about a year and a half of missing critical developmental milestones, Jolene was diagnosed in 2024 with Rett Syndrome, a rare, lifelong genetic neurological condition that affects how her brain communicates with her body. 

Rett impacts nearly every part of Jolene’s daily life. She is not yet crawling or walking, and everyday tasks—holding utensils, playing with toys, and communicating—require significant support. As Jolene grows, her needs are becoming clearer, and so is the importance of consistent, specialized care to help her build strength, mobility, and independence. 

While insurance covers much of Jolene’s medical care, it often does not cover the therapies and equipment that are most impactful for her development and quality of life. These supports are essential, not optional, and they quickly become a major financial responsibility for families. 

Transportation has become another critical need. As Jolene gets taller and heavier, safely transferring her in and out of a standard vehicle is becoming increasingly difficult. A wheelchair-accessible vehicle allows Jolene to travel safely, maintain proper positioning, and continue accessing therapy, medical appointments, and daily life without unnecessary physical strain on her or her caregivers. Because of the specialized modifications required—or already built into accessible vehicles—the cost of a wheelchair-accessible van is significantly higher than most vehicles. 

It’s also important to understand the scale families face. Raising a child with a disability can cost between $1.4 and $2.4 million, nearly ten times the cost of raising a neurotypical child. This journey isn’t an even playing field, and community support plays a vital role in helping families bridge the gaps left by insurance and existing systems. 

The funds raised will help support Jolene in the following ways: 

  • Two 2-Week Physical Therapy Intensives (DMI – Dynamic Movement Intervention):
    $6,750 each
    Therapy "intensives" provide concentrated, goal-specific repetition, which helps strengthen neural pathways in the brain. This short-term, focused approach supports faster learning and stronger movement over time.

  • Weekly physical therapy and/or Trexo robotic walking sessions:
    $225 per session, twice per month
    These weekly therapies support Jolene’s goals of building strength, increasing independence, and working toward mobility. Small, consistent gains can lead to meaningful changes in her everyday life.

  • Wheelchair-accessible vehicle:
    $55,000–$75,000
    Due to the specialized modifications required, wheelchair-accessible vans cost significantly more than most vehicles, but they are essential for Jolene’s safety, access to care, and everyday life.

 
Rachel and Peter will be sharing updates here and are excited to bring you along on Jolene’s journey—celebrating progress, milestones, and all the moments that matter most.
 
Thank you for supporting Jolene and for being part of the community helping her move through the world with more access, comfort, and possibility. đź’›

Organized by Rachel Sloan and Peter Sloan.

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