A GTA Family Has Raised Over $400,000 Towards A Rare Cure For Their 2-Month-Old Baby

The rare treatment costs $2.1 million in the U.S.
A GTA Family Has Raised Over $400,000 Towards A Rare Cure For Their 2-Month-Old Baby

One family in the GTA is currently living a terrifying nightmare. Ricardo Batista and Jessica Sousa of North York, Toronto, are desperately racing to raise nearly $3 million to cure their two-month-old daughter, Eva. Eva has spinal muscular atrophy, which has caused weakened muscles and difficulty breathing, and her parents' ForEva Strong GoFundMe is looking to raise money for an expensive and rare treatment only available outside Canada.

The cure for this disease is available through a one-time treatment in the U.S., which at the moment is the most expensive drug in the world at USD $2.1 million, according to the GoFundMe page. The drug, Zolgensma, is FDA-approved in the States but not in Canada.

As of Friday morning, the efforts had raised close to $450,000 of their ultimate $2.8 million goal, which it is intended would pay for the treatment, accounting for the exchange rate, as well as travel to the U.S.

According to their GoFund Me page, Eva, who was only born on August 11, suffers from SMA Type I and is among the youngest known cases, after being diagnosed at just seven weeks old.

Her donation page reads: "SMA is a nightmare, it is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat or breathe. SMA Type I specifically is the most severe, diagnosed prior to one year of age." According to SMA News Today, it's a very rare disease found in an estimated one in every 6,000 to 10,000 people.

The donation page statement adds: "This treatment has a large price tag of $2.1 million dollars! USD! That's right, talk about putting a price tag on your child's life. It is a devastating amount that any middle-class family can never achieve ... I want to already express my appreciation to everyone who is willing to help our family, we could never gather the proper words to explain the depth of heartache and sadness we are facing. This is something no child or human should ever have to experience."

Eva began her treatment with a drug called Spinraza, which increases survival motor neuron (SMN) protein production, dealing with the underlying cause of SMA. However, according to CTV, Batista said that while the drug will help extend her life for an undetermined amount of time, it is not a cure.

According to the Muscle Dystrophy Association, the younger you are, the greater the impact on motor function the disease has. Youth who display these symptoms at birth or during the first few months have the lowest level of functioning. In Eva's case, she has weakened muscles and has to be fed through a tube due to her difficulty breathing.

"I'm fearful the more we wait, we don't know what the end outcome will be … every day there are small, not small, big changes," Sousa told CTV.

According to the For Eva Strong Instagram page, a fundraiser car show will be held at 7676 Kimbel St. in Mississauga, this Saturday, October 26. The event will be held from 10 a.m. to 5 p.m. and admission costs $20.

"Our baby girl Eva is an expressive, smiley, and happy baby who is loved so much by her family and friends," adds the statement on the GoFundMe page. "She came into all our lives and brought a shining light with her that follows her everywhere she goes. At 2 months of age, her life has already made ours so much more full and meaningful and we could not imagine a life without her."

You can donate to the ForEva Strong cause at the GoFundMe page here.

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