A St.Catharines family fighting against all odds to save baby Lennon
Imagine if we told you it would cost over $2M to try to save your daughter's life?
That's the heartbreaking situation a St.Catharines family is facing after baby Lennon was diagnosed with Spinal muscular atrophy (SMA), a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord.
The one year old girl, who is now using a breathing machine, without treatment will never get be able to walk, eat, or breathe or her own.
It is the number one genetic cause of death for infants.
Her mother, Maura Blair tells CKTB the family is trying to save money to cover a treatment offered in the United States.
The gene therapy works by using a carrier virus to deliver a functioning copy of the missing SMN1 gene.
It is a one time dose administered by IV, and while the drug (Zolgensma) is not a cure, the drug has shown amazing results.
Lennon is cleared to received the treatment, but the pricetag is over a million dollars.
OHIP will not cover the treatment.
$23,000 has been raised so far.