New treatment has given young Tri-Cities twins a chance at life. Now you can help too

Harper and Hendrix Ramos’ parents didn’t have any reason to suspect there was anything wrong with their twin sons.

Doctors gave the boys a clean bill of health, and their other son, Santana, was healthy.

It wasn’t until the two boys were 10 months old that they started to notice something was wrong.

“My husband especially was noticing that they weren’t bearing weight on their legs,” said mother Crystal Ramos. “Harper was crawling a little bit, but not to the point where our oldest was walking at 10 months.”

They heard from plenty of people offering possible reasons why the boys might not be progressing as fast, but their father, Noe Ramos, was not convinced that everything was OK.

So they took the twins to a pediatrician, and that’s when they discovered the boys did not have any reflexes in their elbows and knees.

That led to a trip to Seattle Children’s Hospital. After a battery of tests, they got the heartbreaking news that both boys had intermediate spinal muscular atrophy type 2. The condition means the boys’ bodies are missing protein that would let them use their muscles normally.

The debilitating disease will eventually rob them of the ability to eat and breathe, and doctors said they had a short life expectancy.

“Our first neurologist told us to worry about quality of life, not quantity,” Crystal Ramos said. “Most kids live up to two years. ... When we heard that it really felt like a punch to your gut. ... Once we got home from that long, three-and-a-half hour drive, my husband and I just had to get ourselves out of this rut and say, ‘We’re here for them. Whatever they need.’”

But a recently approved drug is giving the Ramoses hope. Thanks to research funded by the Muscular Dystrophy Association, the two boys have access to Spinraza. They’ve received an injection in their spine every four months for the past two years.

Since they started, the symptoms haven’t gotten worse, and in some ways the boys have gained movement they didn’t have before. Now, they are capable of simple tasks like getting water from the fridge or throwing things into the garbage.

That progress will also let them spend some time with Pasco firefighters outside of the Dutch Brothers on Court Street this week to help raise money for MDA during the annual Fill the Boot campaign.

Fill the Boot

The annual fundraiser, a 65-year partnership between firefighters and the MDA, will send firefighters to locations across the Tri-Cities Friday and Saturday to ask pedestrians, motorists, customers and other passersby for donations.

Firefighters will be at:

• The intersection of George Washington Way and Swift Boulevard in RIchland from 8 a.m. to 2 p.m. on Friday.
• In front of Kennewick’s Fred Meyers from 11 a.m. to 6 p.m. on Friday.
• At Roaster’s Coffee at the corner of Keene Road and Kennedy Road in Kennewick from 8 a.m. to noon Friday.
• At Yoke’s Fresh Market on Road 68 in Pasco, and at the Dutch Bros. on Burden and Court streets on Friday and Saturday.

Along with the other collections sites, Ice Harbor Brewing at 206 North Benton Street in Kennewick is donating $1 from each pint sold on Saturday between noon and 5 p.m.

Association Development Specialist Tori Ripple praised the work the firefighters do raising money and helping in the association’s summer camps.

“The dedication of these firefighters to MDA’s mission is unwavering, spending countless hours both with Fill the Boot and MDA Summer Camp to care for the kids and adults in the Tri-Cities,” she said. “We know that their devotion to our families will make this year’s drive a success.”

Along with the research, the association’s help with support and connecting the Ramoses with other families facing similar issues has been a huge help. Caring for a child with a debilitating illness can be an isolating experience.

The MDA is working to expand screening for newborns for spinal muscular atrophy so they can take advantage of the newest treatments.

For now, the two boys are excited about graduating from kindergarten and starting in elementary school.

This story was originally published May 30, 2019 at 6:27 PM.