“It was really heartbreaking for us,” says Chi on Sancho’s diagnosis. “My husband was a soccer player in his younger years and he had dreams of playing with his son when he grew older,” she adds on her husband Jorge’s dreams for Sancho.
“Angels are for real. Miracles happen everyday. Faith overcomes.”
Ida Anita Q. Del Mundo (The Philippine Star) - May 12, 2019 - 12:00am

MANILA, Philippines — Chi Datu-Bocobo’s son Sancho was diagnosed with Spinal Muscular Atrophy Type 2 (SMA Type 2) when he was just a year old.

“It was really heartbreaking for us,” says Chi on Sancho’s diagnosis. “My husband was a soccer player in his younger years and he had dreams of playing with his son when he grew older,” she adds on her husband Jorge’s dreams for Sancho.

Chi says, “In many ways Sancho is beyond his years. He loves music, sketching, swimming and playdates just like any other kid.”

However, SMA Type 2 is a rare genetic condition that affects the nerve cells in the spinal cord and weakens the muscles.

“Gifted as he is, he is still unable to walk, struggles through various physical, occupational and aquatic therapy sessions and relies on a machine to help him cough when he gets sick.”

Children with SMA Type 2 also have weaker pulmonary functions, making them prone to infections.

“It’s scary not knowing what tomorrow’s going to be like. We knew we had to empower and educate ourselves,” says Chi. “This, our prayer warriors and our faith in God, eventually helped us fully embrace his condition.”

Chi left a career in the broadcast industry to be able to devote more time to Sancho. “I had no regrets, because I knew I was made to serve and love him. I was happy to be able to bring him to therapy and see his progress,” she says on her sacrifices as a mother.

“When I left the news my prayer was to find a job that would allow this kind of flexibility. It isn’t always easy and I’ve had to bring him several times to work, but I’m nonetheless grateful.”

She says Sancho’s caregiver, who has been with the family for six years, is a blessing. “Having someone trustworthy who helps care for Sancho in our absence is such a great blessing. When help is not around, however, I would have to work from home.”

Despite the challenges of Sancho’s condition, he has grown into a confident and personable young boy. “Sancho is quite talented, and exceptionally intelligent. He uttered two-syllable words at nine months, recited everyone’s birthdays at one and spoke complex sentences before turning two.  As a toddler, he was always such a hit with everyone he meets. Today he is a voracious reader and he loves to draw,” the proud mother lists her son’s milestones.

Because of his ability to excel beyond his physical difficulties, Chi dubbed her son Super Sancho – a persona that he has truly embodied.

Sancho has also discovered a love for music. “My side of the family sings a lot and plays musical instruments. Sancho likes all kinds of artists and genres. He loves Sinatra, Bennett, Queen; absolutely adores Michael Bublé, and enjoys the more contemporary Bruno Mars, Ed Sheeran, James Arthur. One of his favorite past times is listening to vinyl records with his dad, so I guess he just imbibed it,” says Chi.

Chi is a talented singer herself and she and Sancho record duets every weekend and post them on the Super Sancho Facebook page – often with an inspirational message from Sancho to his fans.

“I let him sing to his heart’s content because it’s good for his lung muscles too. What surprised me recently was his ability to play the harmonica. I also discovered his ability to harmonize melodies on the fly when he was eight as we were recording a song for our weekend duets,” she shares.

When asked about what motivates her as she cares for Sancho, Chi says, “God’s amazing grace is all I need to keep on. I’ve seen miracles unfold in Sancho’s life and in ours. These have actually inspired people to reach out and encourage us, or tell us they’ve been encouraged by our stories. He loves life and appreciates all that he has, even the littlest things. His indomitable spirit gives me so much strength.”

Chi lists what her family’s journey with SMA has taught her: “Angels are for real. Miracles happen everyday. Faith overcomes.” 

To special moms like her, she urges: “When you think you’ve hit rock bottom, you really haven’t. If you choose to hold on to even that one percent of hope remaining in your heart, you’ll be able to accomplish far greater things not just for yourselves but for others.”

Chi hopes that Sancho will have a full and meaningful life. “May he always be the Super Sancho people know him to be. May he live to see many more of God’s miracles not only for himself but for others whose lives he will touch. May he journey with friends and family who will love him unconditionally. May his life be a testament of God’s amazing love.”

She adds, “Of course, I’ll always be his cheerleader, production crew, music teacher, martial arts mom and everything else he wants me to be.”

Now, she is no longer afraid. “God loves our son to infinity, which is much much more than we could ever love him, so being fearful about his future makes absolutely no sense,” she says with courage and strength that only special moms – super moms – can have.

CHI DATU-BOCOBO MOTHERSDAY2019
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