ABOUT ELLA - OUR STORY
Ella was born in the US Virgin Islands, on April 12, 2014, a happy, healthy baby girl weighing 7 pounds 12 ounces.
Ella was diagnosed with hypotonia at 8 months old, this delayed her ability to walk until 20 months. Throughout her first year and a half, she was able to speak and loved playing with her toys. Ella’s ability to walk was labored but she was unable to run, climb and dance like other little girls. Her doctors advised us she may be developmentally delayed and we began extensive therapies.
Ella became less responsive to her name and wasn’t meeting her 18-month milestones. We chose to have Ella tested for Autism. After a series of evaluations, she was diagnosed with Autism (a symptom of Rett Syndrome), we continued numerous therapies with the hope Ella would regain the skills that she was losing. Ella began to shake frequently and lose the ability to pick up food or use her hands to feed herself. The shaking was mimicking Parkinson's (a symptom of Rett Syndrome) and her motor skills were imitating Cerebral Palsy (another symptom of Rett Syndrome).
Ella’s doctor ultimately suggested that we should have Ella genetic tested for Rett Syndrome. Although Rett Syndrome is spontaneous, not hereditary, it can be found with MECP2 testing. The results were negative for Rett Syndrome (these results would prove at a later date, to be a “False Negative”).
After several months, we felt in our hearts that Ella was experiencing much more than Autism. We made an appointment with the Children's Hospital of Philadelphia.
The results, this time, were positive... Ella was diagnosed with Rett Syndrome, a progressive severe neurodevelopmental disorder that affects brain development and cognitive ability, leading to life long difficulties with language and muscle control.
As a parent, I couldn't breathe, all I could do was cry, day and night. I fully researched the diagnoses and quickly sought to understand how this devastating condition affects your child, it was heartbreaking.
I spent a few weeks in a grieving process, I can't explain, it felt like death. Then I realized how lucky I was that I could hug my child, kiss her every day and tuck her into bed at night. From this research and grieving process, my husband and I realized we had to create awareness and raise funds to find a Rett Syndrome research and cure.
February of 2018, Ella was admitted to the Texas Children's hospital with Gastric Volvulus, (abnormal torsion of the stomach) and had emergency surgery. Ella’s was hospitalized over two weeks and a g-tube was surgically inserted in her stomach.
Today, Ella is nonverbal, she is unable to run or walk up steps without assistance, she cannot feed herself, she prescribed daily seizure medication, she spends most of her days hyperventilating, she has lost all purposeful use of both her hands and needs 24-hour care.
Ella is a very loving strong-willed child, she has so much courage for someone so small and she inspires me every day to do great things. If Ella’s could speak, she would tell you her hope is for a cure for every little girl like her. To have a normal life, a life full of recovery, joy, and contribution.
From this, Ella’s Hope was born.
Lauren Bannon- Gaspard
RETT SYNDROME CAN BE CURED.
Rett Syndrome is unknown to so many people because it is a rare condition. By reading this, you have joined our campaign for awareness and we hope we have been successful in some way in the education of Rett Syndrome. Please join us in our journey for a cure. It means the world to Ella and every little girl just like her.
Shaine and Lauren Gaspard