Nineteen-month-old Terrance Shrestha of Nepal was diagnosed two months ago with Spinal Muscular Atrophy, and he isn’t expected to make it to age five without specialized treatment. His family is working quickly to try to raise $2.4 million for a life-saving drug.
West Harrison native helping Nepali family raise millions to save toddler’s life
Nineteen-month-old Terrance Shrestha of Nepal was diagnosed two months ago with spinal muscular atrophy, and he isn’t expected to make it to age 5 without specialized treatment.
His family has found a drug that would save Terrance’s life, and stop the progression of the disease, but it comes with a $2.1 million price tag.
His family is working quickly to try to raise the funds, along with the help of Ryan Warmuth, a family friend who also lives in Nepal, but is originally from West Harrison.
Sushan Shakya, Terrance’s uncle, said everything had been normal with Terrance until he started missing some developmental milestones, such as crawling and standing.
After the family saw several pediatricians and a pediatric neurologist, Terrance was diagnosed with SMA Type 2. Without treatment, not only will he most likely have a short life, he will also face a variety of hardships.
Shakya said Terrance already has dealt with one bought of pneumonia and will continue to have recurring pneumonia, because his body is unable to adequately keep food particles out of his lungs.
His muscles will continue to lose tone and he won’t be able to keep fluids out of his windpipe.
Terrance also has scoliosis and can’t walk or crawl, but can sit up on his own. Although the family hasn’t been able to pick it up yet, they have had a lumbar brace created for him, as well as a modified chair.
The family is working to raise the $2.1 million, as well as another $300,000 for other expenses, such as the cost of hospitalization.
If they are successful, Terrance would get the gene therapy drug Zolgensma at Nationwide Children’s Hospital in Columbus, and Shakya’s family even has Nepali friends that live in Columbus.
The fundraising campaign was recently launched, and although they raised more than $7,000 early on, Warmuth said it’s only a small portion of what they need.
But, he said they know of a family in Belgium, and another in Massachusetts, who have been able to pull it off, and the fundraiser for Terrance has started to spread around the world.
“It really doesn’t take that many people donating $10 to make this happen,” said Warmuth.
But, even if the family is able to raise the money, there are other complications.
Zolgensma only works on children under 24 months of age, and Terrance is already 19 months old.
The COVID-19 pandemic situation makes travel from Nepal to the United States more complicated, and even getting approval to send the money abroad is a concern.
The family is exploring another possibility, which involves applying for a lottery system, implemented by the Zolgensma drug maker, that will give away 100 free doses.
Shakya said it kills him that no family would be able to afford this drug, and he thinks about other families in Nepal who have a child with SMA, but don’t have the same resources as him.
Those who want to donate to the Shrestha family can visit teamterrance.com.
Warmuth is impressed with how far the family has come in the two months since the diagnosis, he said, and Terrance’s parents are committed to doing whatever it takes to take care of their son.
Shakya said Terrance is like other children in many ways. He has his good moments and bad moments, likes attention, and is sometimes jealous of his sister.
Shakya said the family has taught Terrance how to make lines and circles on a whiteboard, and they are now working on squares and triangles, to help with his motor skills.
Shakya and Warmuth have known each other for more than one year and are already close friends.
After Warmuth moved to Nepal to launch a goat farm, the two met through the agriculture sector.
Shakya has been an amazing guide and teacher, said Warmuth, helping him navigate Nepali society.
Warmuth said his farm couldn’t have existed without Shakya, who has been an important player in setting it up.
“We’ve had a lot of fun pulling this together,” said Warmuth.