Ella's Hope

Ella's Hope Hi, I am Ella. I have a rare, severe neurological disorder, Rett Syndrome. This disorder affects girls but strikes all racial and ethnic groups.

I am the only Virgin Islander living with this condition. My disorder affects mostly girls but strikes all racial and ethnic groups. I have lost my ability to speak. My hope is to raise money for research grants and bring a voice (awareness) to others living with my disorder – I bet you had to Google it
Thank you for helping me on my journey to search for a cure. US Virgin Islands population living with Rett Syndrome: 1

THANK YOU!!We are so grateful to Ella's Godfather, Filippo Cassinelli, and his fiancée, my best friend, Daniela Gaggl, f...
05/02/2026

THANK YOU!!

We are so grateful to Ella's Godfather, Filippo Cassinelli, and his fiancée, my best friend, Daniela Gaggl, for their generous support of Ella’s Hope. Because of you, we are one step closer to funding breakthrough research for Rett syndrome, including innovative gene therapy focused on the MECP2 gene.

100% raised. 100% donated. Every time. ❤️

Help us wish Ella a very Happy 12th Birthday on April 12th! 🎉💖We’ll be reading every birthday wish to her!
04/12/2026

Help us wish Ella a very Happy 12th Birthday on April 12th! 🎉💖
We’ll be reading every birthday wish to her!

THANK YOU!!We are so grateful to our wonderful neighbors, Dave and Kathy Pelino, for your generous support of Ella’s Hop...
04/05/2026

THANK YOU!!
We are so grateful to our wonderful neighbors, Dave and Kathy Pelino, for your generous support of Ella’s Hope. Because of you, we are one step closer to funding breakthrough research for Rett syndrome, including innovative gene therapy focused on the MECP2 gene.

100% raised. 100% donated. Every time. ❤️

Ella update: A spring stroll through the tulips 🌷💐Today, she wanted out of her chair. Not because it was easy, but becau...
03/22/2026

Ella update: A spring stroll through the tulips 🌷💐

Today, she wanted out of her chair. Not because it was easy, but because she wanted to walk through the gardens. ☀️

So she stood and she stepped. Not many. Not perfect.
But they were hers 💜

We are incredibly grateful to the highly skilled team at Duke Children’s Hospital for the exceptional care they provided...
03/05/2026

We are incredibly grateful to the highly skilled team at Duke Children’s Hospital for the exceptional care they provided Ella during her spinal fusion surgery.
Thank you the orthopedic spine surgeons, neurosurgeons, anesthesiology physicians, neuromonitoring physicians, surgical nurses, radiology and imaging physicians, blood management team, pediatric specialists, ICU and critical care physicians, pain management physicians, respiratory therapists, and physical therapists.
Seeing her comfortable when this photograph was taken was a reassuring moment for our family and a very encouraging sign.💕
Duke Children's

Sweet Ella and her HD eyebrows resting comfortably.The medical team here at Duke Children’s have been phenomenal and are...
03/04/2026

Sweet Ella and her HD eyebrows resting comfortably.

The medical team here at Duke Children’s have been phenomenal and are keeping her pain well managed.

Before. After.On the left is Ella’s spine before surgery. It was severely misaligned, pulling her body out of balance an...
03/01/2026

Before. After.
On the left is Ella’s spine before surgery. It was severely misaligned, pulling her body out of balance and compressing her internal organs.

On the right is after surgery.
She underwent a full spinal fusion from T3 to L5. Her spine is held steady with a lot of internal hardware supports, giving her body the stability it couldn’t provide on its own due to hypotonia caused by her condition.

This was a major, life-altering surgery and an incredibly hard thing for such a small body to go through.

This surgery didn’t fix her disability. It wasn’t meant to.

It was meant to help her breathe easier, have better balance, protect her body as she grows and improve her quality of life.

Rett syndrome is the monster in her story, and every day she proves it doesn’t get to win.

Today is Rare Disease Day.For over 11 years, Ella has been fighting Rett syndrome. Yesterday, she underwent one of the m...
02/28/2026

Today is Rare Disease Day.

For over 11 years, Ella has been fighting Rett syndrome. Yesterday, she underwent one of the most invasive surgeries possible. Today, the very next day, she sits up in the ICU, pushing through the pain.

That is strength.

Another battle fought and won. Not because the fight is over, but because she keeps showing up. Ella is a warrior, and this is what real resilience looks like. 💕

We wanted to provide an update: Ella is currently in the pediatric ICU and is being closely monitored by her medical tea...
02/27/2026

We wanted to provide an update:
Ella is currently in the pediatric ICU and is being closely monitored by her medical team. We remain hopeful and focused on her recovery. Thank you for the continued prayers and support. 💕

We started Ella’s Hope to bring those who love Ella along on her journey. 💕As Ella grows, the decisions around her care ...
02/27/2026

We started Ella’s Hope to bring those who love Ella along on her journey. 💕

As Ella grows, the decisions around her care continue to evolve, carry more weight and become more heart-wrenching.

Today is one of those days. Ella is undergoing neurosurgery as part of an eight-hour, extensive spinal fusion.

Thank you for the prayers, love, and good energy being sent her way. We feel it.

She is in very good hands with the orthopaedic and neuro surgerical teams at Duke Children’s Hospital. We’ll share updates as we can.

Address

1003 Estate Ross
Durham, NC
00802

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

3378026761

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