As originally reported in Smart Parenting; many families with rare diseases are struggling to keep up with their healthcare regime as new restrictions block families from accessing doctors and normal resources, and the infectious COVID-19 presents a heightened risk for some patients.  For Wendy Valdez, Filipino actress and beauty queen, this means taking on her son’s normal therapy regime. This time, as the instructor.

Spina Bifida

Spina bifida is a rare disorder that is the result of the fetus’s spinal cord not completely closing when it was developing in the mother’s womb. Because part of the spinal cord is exposed, it can protrude through the spine causing nerve damage. Though there is surgery to close the opening, the nerve damage is permanent. This causes paralysis of varying extremity in the lower half of the body. It can also cause difficulty walking, intellectual disability, seizures, bladder control issues, and the characteristic fluid filled sac covering the spinal cords protrusion from the spinal canal.

Seth’s At Home Therapy

Wendy has been public about how she handles her son Seth’s therapy on social media. She explained, “Seth goes to UST three times a week for therapy. Now that we can’t get out, we practice his standing and walking at home.”  She explained though medical care is exempt from travel restrictions, she’s chosen to stick to full quarantine due to Seth’s weak immune system making him more vulnerable to the disease.

Wendy instead has taken over the task of helping Seth learn to walk and balance. While before he was only able to use his right leg, he’s progressed to using both. He’s still working on learning to balance. Wendy uses a hip-knee-ankle-foot-orthosis (HKAFO) brace to stabilize him and his movement. He also is aided by a walker with four wheels to help him endure the energy consuming exercises and walking. For Seth, all of this takes a lot of extra work and energy, but in Wendy’s videos, you can see his excitement as he makes his way across the room, picking up toys as his task.

Wendy’s religious beliefs come out in her posts. She attributes her hope for better days to that, whether they will be spared from the virus or not. She said, “We stay home, not just because we want to protect ourselves; but because we want to help our nation, to contain, and eliminate the virus as fast as possible.”