Happiness is a universal language that transcends racial and cultural differences. It manifests in broad smiles that light up faces and crinkle the corners of eyes.
But what does happiness look like for children who have neuromuscular disorders, which impede their ability to smile and laugh? For HCA Star PALS patient Danielle Seah, spinal muscular atrophy has robbed her of her mobility and physical strength, but it has not deterred her parents, Frederick and Rebekah, from doing their best to fulfil her potential and improve her quality of life.
Danielle requires various medical devices to help with her basic functions.
Hooked up to several medical devices, including a Cough Assist Machine to help clear Danielle’s secretions, her parents have made a comfortable space for her in their living room to accommodate these machines.
To stimulate Danielle mentally, her parents engaged a teacher trained in special education several years ago, to come to their home for one-on-one lessons with her.
Today, Danielle understands the meaning of simple words and common objects and is able to communicate her wishes through eye movements. Danielle’s favourite activities like reading a book and watching her favourite cartoon Peppa Pig are printed on a chart with simple words like “book” and “YouTube”, with accompanying images. She blinks in assent when Kay Thompson, her Medi Minder, who comes by once a week, points to the activity she wants.
Danielle watches cartoons on YouTube while Kay paints her nails.
Similarly, Danielle is able to voice her dissent. “Sometimes she finds certain cartoon characters scary and she’ll make protesting sounds,” Kay says. “I’ll then look quickly for a different video for her to watch.”
Kay often works on art and craft projects with Danielle.
Kay spends several hours each week with Danielle, lending a helping hand to the family’s helper with Danielle’s nursing needs and engaging in different activities with her. “We usually begin with joint exercises to minimise muscle contracture,” Kay explains. “For the rest of the afternoon, we will make cards together for Mummy, read storybooks or work on some art and craft together.”
Every girl loves a touch of pampering every now and then, and Danielle is no different. “Danielle loves getting a manicure and having facial massages,” Kay says with a smile.
Danielle might not have the ability to vocalise her thoughts, but the ambience is a serene and beautiful one – she looks at Kay in quiet contentment as the latter gently massages moisturiser into her skin.
Kay tenderly massages Danielle’s face with moisturiser, a routine she enjoys.
A good day for HCA Star PALS patients like Danielle might look a little different from that of her able-bodied peers, but it represents hope and strength, for all the countless challenges Danielle and her family continue to overcome.
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