George and Chi Bocobo have always wanted a child and was thrilled when Sancho came into their lives. Today, Sancho is 7-years-old and suffers from SMA, an inherited disease called Spinal Muscular Atrophy. This means his movements are limited, he can’t breathe or swallow on his own, he cannot stand or walk unaided.
They realized something was different when Sancho was 5 months old. He wasn’t as energetic as babies his age. They had his blood tested in the U.S. and 7 months later, he was diagnosed as having Spinal Muscular Atrophy, type 2. It was frightening for George and Chi as well as depressing to find out that their only child was afflicted with this disease. According to Chi, “So it’s very depressing noh. It’s very scary for parents to learn about SMA actually. Parang it pays like a very sad future for you. Parang ang gloomy ng future. So sometimes, bina-balance ko rin kasi I empower myself as a mom and my husband too. We empowered ourselves by reading on it, by researching on it. He attended the conference also on SMA sa abroad para maintindihan naming kasi konti lang ‘yung kilala naming may SMA na mga anak.” Yet despite the odds and rising expenses, miracles continue to happen.
“Si Sancho nung baby siya, hirap siyang umubo,” Chi said, narrating the experience. ” Tapos nabasa naming na sa America, at sa ibang bansa na may mas maraming SMA na bata, talagang sa bawat bahay, meron silang tinatawag na cough assist machine. Yung cough assist machine, parang it trains the kid to cough. Parang it mix the cough motion para later on, matuto rin siya umubo on his own. Mailabas niya, ma-expel niya kung ano dapat na fluid i-expel para hindi siya nagkaka-pneumonia. So, imagine mo yun, parang sa hospital kung saan naming siya na-confine, wala pang cough assist machine. So nagpapanic kami. But you know, the next day, sa kakaresearch naming, we found out that there is like a model unit here in the Philippines na they are willing to sell to us. Tapos yung good Samaritan, he is actually the employer of George, who told us “okay, I can buy it for you and you can pay us whenever you are able.” So imagine mo, kahapon wala kami nun. Next day, pinadeliver sa bahay.”
“Another example was when may nag-approach kay Sancho na isa siyang sister sa community. Nakita siya, nakilala siya, napamahal sa kanya.. Tapos sabi niya meron siyang pinoproduce na music album pero hindi muna niya ipapa-publish or ipi-print kasi gusto niyang idedicate lahat ng proceeds nun kay sancho. Imagine mo yun, eh kakameet lang niya. So hiningian niya ako ng awit ko. Kung meron akong kanta para pwede kong idedicate kay sancho. At meron akong kanta na ibinigay so that was really my song to god for sancho. Tamang tama. Tapos hiningian niya ako ng konti information about Sancho tapos isasama raw niya yun sa album. Tapos, alam mo nangyari doon? Naprint na yung cd, yung album tapos sabi niya, lahat ng proceeds niya, bibigyan kita siguro 2,000 copies. Lahat ng proceeds niyan sa inyo na. gawin mong pang fund raising. Imagine mo, hindi mo siya kaano ano but he will—yung parang love from god through that person, we really felt it.”
The latest news was when they found out that there’s a cure now for SMA and it is FDA approved in the United States. They are just waiting to be able to receive the treatment.
Sancho engages in water and physical therapies to strengthen his muscles and improve his power motor skills. Hopefully this will help him learn to do things on his own such as dress up and brush his teeth. Yet despite these physical hurdles, Sancho has shown remarkable intellect and maturity, which is uncommon for his age.
According to his mother, “kasama sa condition ni Sancho na he is very cognitively advanced. So at 9 months, he was speaking. I mean it’s unbelievable. Minsan inaaral nga siya ng mga team of doctors kasi they’d never heard a child na parang talk that way. Saka ‘yung knowledge niya, parang in such an early age, parang sobrang deep.”