Ellie's Medical Fund

Elleona Remy Downes was born a beautiful bundle of joy on March 31, 2015. Ellie was a blessing for her Mom, Dad, Sister and Brother. Ellie's older sister and brother were very excited when she came home!

Ellie was almost two months old when she began having Infantile Spasms. She was admitted to Boston Children's Hospital. Doctors diagnosed her with a rare genetic disorder that only affects girls, Aicardi Syndrome.

This news was beyond emotionally devastating for her family. Ellie's parents remain strong and hopeful for her future through the support of family, friends and the Grace of God. The long-term costs of care and treatment will be immense, but Ellie's parents have vowed to do whatever is possible to give her a normal life.

This news was also financially devastating for Ellie's family. Ellie's mom had recently returned to work after her maternity leave. Ellie's mom had to stop working because of Ellie's extended stay at Boston Children's Hospital. Because of subsequent stays at Boston Children's, doctors appointments and caring for Ellie, she has not been able to return to work. The back and forth trips to Boston and loss of income have created a financial hardship for Ellie's family.

There are two main aspects of treatment that are vital for Ellie's future. The first is controlling her seizures so that her brain can grow, develop and make new pathways. Without proper seizure control, many girls with Aicardi don't live past childhood. The second aspect is to focus on intense Neuromovement Therapy to help Ellie meet development milestones. It is her family's goal that one day Ellie will walk, talk, dance and sing.

Ellie initially responded well to high-dose anti-seizure medication. After her second dose, she stopped having spasms. Without spasms she once again started developing normally,  smiling, laughing and cooing . Her beautiful smile can light up a room and melt your heart. 

Recently, Ellie began to have spasms again. After research, Ellie's parents have decided to try an anti-seizure medication that is not covered by their insurance.

On July 21st, Ellie will begin working on the second aspect of treatment: critical Neuromovement Therapy and neuroplastic healing. Ellie will begin working with pediatric neurologist, Dr. Martha Herbert. Dr. Herbert has a small clinic in Cambridge, Massachusetts that specializes in the Anat Baniel Method. Ellie's parents are thrilled that Dr. Herbert has agreed to work with Ellie. Dr. Herbert's Clinic does not accept insurance but children with genetic disorders have had tremendous success with ABM therapy.

The Anat Baniel Method is based off the work of Moshe Feldenkrais. ABM is a science based breakthrough approach that focuses on the child's brain and it's remarkable ability to learn. Based in the science of brain plasticity, ABM provides transformational help for children with special needs overcome their limitations.

It is a goal of Ellie's parents to take her to San Rafael, California to take part in an ABM Intensive program. Ellie will receive five hours of therapy a day. Ellie's parents will learn invaluable skills to continue working with Ellie at home.

Please help Ellie's family through this difficult and trying time. Please help make it possible that Ellie receives the treatment that she desperately needs.

Thank you all for your love and support!

Donations ()

  • bob klugman 
    • $250 
    • 33 mos
  • Eileen Doherty 
    • $100 
    • 49 mos
  • Sharif El-Gamal 
    • $500 
    • 50 mos
  • Nicole Boudreau  
    • $30 
    • 51 mos
  • Patty Finnegan-Dattel 
    • $100 
    • 51 mos
See all

Organizer and beneficiary

Joshua Aull 
Middletown, RI
Remy Aull 
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