Meet Paisley

Paisley is a determined and outgoing two year old from Oklahoma who knows her people and loves them well!

Every purchase in January will go to help with the cost of therapies for Paisley.

We invite you to watch her video, read her story, and subscribe to our podcast to listen to a conversation with her mom & dad.

On February 21, 2022, Marissa and Chris welcomed their bundle of joy, Paisley, into the world. Little did they know that their journey would take unexpected turns as Paisley was diagnosed with Neonatal Marfan’s syndrome shortly after birth, a condition occurring at a frequency of 2 to 3 people per 10,000.

Paisley’s medical story began with a dramatic entrance, marked by a c-section due to her fluctuating heart rate. The discovery of a heart murmur, turned-in feet, and unusually long fingers prompted a swift transfer to a different hospital, where the diagnosis unfolded. Neonatal Marfan’s syndrome, a rare connective tissue disorder, became the new reality for Marissa, Chris, and their newborn daughter.
Amidst the shock and uncertainty, the couple navigated the complex world of rare medical journeys, seeking answers and understanding. Ophthalmologist visits revealed extreme nearsightedness, while orthopedic consultations addressed hip dysplasia, courageously tackled with a brace. At fourteen months old, Paisley underwent open-heart surgery, a crucial milestone to pave the way for a healthier future.
The surgery aimed at repairing two leaky heart valves, with future plans for addressing her aortic root. Despite the challenges, Paisley’s resilient spirit shines through. A near two-year-old powerhouse, she embodies determination, shouting “try again” when faced with falls—a testament to her incredible strength.

Recently, Paisley’s journey took an inspiring turn with an intensive three-week physical therapy program. The program propelled her from nowhere near walking to confidently moving with assistance. This remarkable progress, achieved in a fraction of the time normally expected for children her age, reflects Paisley’s unwavering determination. Marissa and Chris express a desire to continue such therapies, recognizing the positive impact on Paisley’s physical development.

On an average day, you can find Paisley running the house with gusto. She finds delight in outdoor swings, blocks, and books. With each step, she defies expectations, and embraces every adventure, even if it means a collision with the family dog.

Looking ahead, Marissa and Chris envision a bright future for Paisley. From the excitement of attending school to the simple joy of walking and exploring national parks, Paisley’s resilience fuels her parents’ hopes and dreams. Her outgoing nature and love for people make her a beacon of inspiration for everyone around her.

Reflecting on the journey, Marissa shares invaluable lessons learned. She emphasizes the importance of taking things day by day, adapting to challenges, and finding strength in unexpected places.

“Paisley has taught me that I am stronger than I think I am. I am able to adapt easier than I thought, no matter how stressful things are. We always figure it out. She makes it easier. She is so adaptive to everything that it’s nice to just take her to appointments and go with the flow,” Marissa shares.

Every word Paisley utters resonates with gusto, reflecting the incredible strength within. Her journey is a testament to the power of family and impact of community. As Paisley continues to embrace life with enthusiasm, the community rallies together to shout love for this extraordinary little girl.

Time to get loud shouters!

Throughout the month of January we will be shouting loud for Paisley!

So click here to shop now where every purchase in January will go to help with the cost of therapies for Paisley.

To help support kids like Paisley every month, click here to start a monthly subscription.

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