Save Little Lex
Donation protected
For USA donations in $ use this fundraiser
For £ use: https://gofund.me/373d1062
For € use: https://gofund.me/ad609346
Lex has an ultra-rare disease (only about 60 cases ever diagnosed), SMARD1. We had no idea until he stopped breathing in his mother’s arms one morning when he was 14 months old. He suffered 4 heart attacks and a stroke. Luckily with CPR and a fast ambulance response, Lex lived. We spent the next 8 months fighting a hospital that only wanted to end his life. Eventually, we won, and Lex has been safe and (VERY) happy at home for over 2 years now. We were told that there was no way he would live past 2, and he is currently almost 4.5 years old and going strong. We were told that there was no hope for any treatment or cure - one doctor even laughed in our faces when we told them about potential gene therapy in the US.
For £ use: https://gofund.me/373d1062
For € use: https://gofund.me/ad609346
Lex has an ultra-rare disease (only about 60 cases ever diagnosed), SMARD1. We had no idea until he stopped breathing in his mother’s arms one morning when he was 14 months old. He suffered 4 heart attacks and a stroke. Luckily with CPR and a fast ambulance response, Lex lived. We spent the next 8 months fighting a hospital that only wanted to end his life. Eventually, we won, and Lex has been safe and (VERY) happy at home for over 2 years now. We were told that there was no way he would live past 2, and he is currently almost 4.5 years old and going strong. We were told that there was no hope for any treatment or cure - one doctor even laughed in our faces when we told them about potential gene therapy in the US.
Now that there is a hospital in the US working on gene therapy and the only site in the entire world with expertise in Lex’s rare disease, we need to get him to the US for treatment. Lex is an amazing and truly happy little boy. He needs a tracheostomy and lots of machines to live with SMARD1, but never stops smiling, laughing, and bringing joy to everyone who knows him. Against all odds, Lex has been a fighter at every step. He is a remarkable child who absolutely deserves to live. Please help us get him to the US -his only chance for proper expert care and life- saving treatment.
If we can raise £200,000 (about $270,00 USD / €240,000) we can get Lex safely to the US for long-term treatment, but we have to hurry! SMARD1 is a rapidly degenerative disease, so every minute with Lex is precious.
We have fought so hard to keep Lex safe and happy, and we are so close to real life-saving treatment. Please help us with any and all donations to save our Little Lex.
#SaveLittleLex
#smashSMARD
Organizer
Sandra Corbett
Organizer
Port Charlotte, FL
