Music lovers will have an opportunity to enjoy some beautiful religious music and help try to save a precious little girl’s life at the same time.
The Amazing Rhythm Disciples are presenting a free music concert at the Many Community Center at 7 p.m. on Friday, November 22. Doors will open at 6 p.m. and the concert of old traditional hymns and some newer ones to will begin at 7.
No admission will be charged but concert goers will be asked to make a donaion to SAVE LYDIA.
Lydia is a two-year old precious little girl living near Natchitoches and Many. She has a rare disease similar to Alzeiheimers in older adults. The disease is called San-Filippo Syndrome which is terminal. Lydia’s little body is dying. Life expectance is not beyond teenage years Before her disease takes over her body and brain damage starts to occur, there is only one chance to save her.
There are no current tests or cure approved by the FDA, only clinical trials. But there is some hope. These clinical trials have a gene therapy treatment and an enzyme replacement therapy. In SanFelippo Syndrome, Lydia’s little body ismissing an enzyme that is used to break down sugar molecules. Without this enzyme, toxic waste builds up in the body.
As the years gooby and more toxic waste builds up, it starts to affect Lydia’s brain, causing damage, leading to Lydia to lose or forget all of her abilities such as walking, talking, and feeding herself, everything that she has already learnedd. This is why it is called Childhood Dementia. She will also endure pain and suffering and then die. This disease is 100% fatak, Lydia must have a clinical trial before this dreaded disease starts to damage sweet Lydia’s brain.
There are currently no openings for Lydia. But this is how you can help Lydia,by donating money to help get Lydia accepted into a clinical trial.
There will be a donation box at the entrance to the Community Center. Every dollar counts. Lydia needs a miracle and the Sabine/Natchitoches parishes can be part of the miracle by attending this FREE concert and donating to Help Save Lydia. The goal is to raise $1 million dollars to help fund a clinical trial and give Lydia a chance at growing up, a chance at life.
Previous clinical trials for SanFelippo Syndrome have shown real promise. But this money will be used to fund more trial opportunities for Lydia. This campaign for Lydia’s life is as urgent as it gets.
It’s now or never for Lydia. With the funds and her diagnos, Lydia is almost certain to be accepted into a clinical trial. This is her onlyhope.
Those people who are unable to attend the concert and make a donation may donate through Go-FundMe.com/SaveLydia.