Mobility Matters: My Life as Zoë’s Mom and Caregiver

Sierra Dillard is the mom and caregiver of 11-year-old Zoë Sparks, who is living with cerebral palsy and multiple other mobility-impacting diagnoses. We asked Sierra about her daily routine with Zoë, how mobility impacts their present and future, and how community support can change their lives.

Mom Sierra Dillard holds her daughter Zoë's hand to help her paint at a birthday party activity. Sierra has brown skin, a black t-shirt, braided hair, and hook earrings. Zoë has brown skin and curly black hair. She sits in a supportive mobility device. A graphic button reads Mobility Matters with a sunburst graphic.

When she was first diagnosed, I knew very little about cerebral palsy. So, I began to research it and her other diagnoses to determine all the ways I could support her.

We attended lots of different specialty appointments and connected with early intervention support to begin therapies as soon as possible.

Zoë is in physical therapy seated on a teal cylindrical therapy cushion as she practices lifting a pink plastic bar over her head with assistance. Zoë has brown skin, dark brown eyes, textured black hair, and white shorts. Her physical therapy is Asian with straight black hair and brown eyes.

Her mobility is extremely limited. Even though she tries really hard, her body lacks the capability to control the muscles required to perform small and large movements—like holding her own head up, crawling, walking, running, jumping, or even picking up and holding toys.

Zoë is overjoyed at her birthday party. She sits in her black mobility and has brown skin, brown eyes, and textured hair in two pigtails. She wears a t-shirt with the number 9 and a multicolored tulle tutu. Behind her is a table full of rainbow-colored treats and a Happy Birthday cake covered in painting decorations and edible paint splatters.

We start with morning medications and a breathing treatment at 5 a.m. that includes physical therapy with her chest, using a nebulizer, cough assist treatment, and suctioning treatment.

Next, I bathe Zoë in a specialty bath chair. I get her dressed and put on her hand splints and mobility support devices. I begin her feeding for the day with a feeding pump.

While she enjoys her favorite morning shows, I begin breakfast and get my other kids ready for their school days as well. Once everyone is ready, I begin school drop-offs.

Zoë and her siblings are in matching outfits for a family portrait. Zoë has brown skin and brown eyes and wears a tartan dress as she sits in her black mobility chair. Her textured hair is partially curled. Her older sister stands with a blue ribbed sweater and a tartan skirt with a silver locket around her neck and solid white tights. Her sister has brown skin and brown eyes and curly brown hair in two long pigtails. Zoë's youngest siblings are a boy and a girl wearing formal attire with tartan accents.

Zoë loves school and interacting with other students. Because she needs assistance with tasks and medical support throughout the day, a dedicated nurse and aide attends class with her.

After her school day, Zoë attends daily therapy—physical, occupational, speech, technology and communication, or feeding therapy depending on the day.

In a classroom setting, Zoë stands in a wood and metal standing frame with a fold-out desk and cushion in front of her. Zoë has brown skin, brown eyes, textured black hair in braids with a pink ribbon, and light pink glasses.

After therapy, we pick up her siblings from school and head home. Zoë spends some time in her stander while I make dinner and her siblings complete their homework. During dinner, we like to watch a family favorite on TV and just enjoy each other’s company.

I bathe my little ones and we all enjoy a bedtime story. Zoë receives her evening breathing treatments and medications, and then we rest.

Zoë receives a hug from her older sister as both girls look at the camera and smile. Zoë and her sister both have brown skin, brown eyes, and textured dark hair (Zoë's hair is in two bubble braids).

Physical therapy is imperative for Zoë to help with normal daily activities and decrease her pain and discomfort. It can also improve movement over time.

Occupational therapy helps Zoë learn to use her hands and support trunk control.

Feeding therapy helps Zoë to swallow safely and open her mouth so that we can brush her teeth.

Speech therapy is wonderful because it teaches Zoë ways to activate her voice and use her mouth. OT-Tech is a combination therapy in which she works with an OT to support her positioning while a specialty speech therapist helps her to use a communication device. This will give her the capacity to communicate with others despite being nonverbal.

Zoë looks excited as she participates in physical therapy. She has brown skin, brown eyes, and textured black hair. She is standing with assistance wearing a long-sleeved white t-shirt, diaper, and two bright pink leg casts. Her PT professional is Asian with straight black hair and a big smile, wearing a mulberry-colored t-shirt.

Encouraging greater mobility and independence is a major goal for me and Zoë as she grows. It’s so important to me that Zoë feels supported and empowered to move on her own and be as independent as possible within her abilities.

Zoë stands in a black mobility device. She is strapped in at the chest, waist, and knees, and the device can roll. Zoë has brown skin, textured black hair, and brown eyes.

I love how excited Zoë gets when she is able to complete something—especially when she is able to participate with little assistance. We are always looking for ways to nurture that independence as much as possible.

With considerable therapy, assistive technology, and adaptive equipment, it’s possible that in the future, Zoë will be able to hold her own head up and even take steps.

Zoë participates in physica therapy in a rehab setting. Her PT supporter is seated on a blue therapy table to support Zoë's body as she stands. Zoë has brown skin, textured black hair, a Hello Kitty sleeveless top over a pink long-sleeved shirt, jeans, soft leg braces, and pink sneakers.

Zoë’s future health and happiness are dependent on costs that insurance doesn’t fully cover. In fact, insurance doesn’t fully cover most of Zoë’s needs.

Zoë takes daily medications to survive that aren’t fully covered by insurance. Every aspect of her daily life is impacted in some way by her CP diagnosis, and so many aspects come with an out-of-pocket cost.

Mom Sierra holds Zoë afloat in a pool. Sierra has brown skin, braided black hair, and a navy swimsuit. Zoë has brown skin, black textured hair, and a blue life vest that covers most of her body and torso from the neck down.

Insurance does not cover: all of her therapies; her specialty adaptive equipment; adaptive clothing or shoes; bibs; diapers; wipes; an activity chair; bathing equipment; an accessible vehicle; specialty camps; schooling; or even toys—a way for Zoë to enjoy her childhood just like every other kid.

Zoë is very excited as she encounters six young goats in an enclosure. The goats sniff at Zoë's black mobility device, to which she is strapped at the chest. Zoë wears purple wrist braces, matching purple pants, and gold cat ears. She has brown skin, brown eyes, and textured black hair pulled back.

I chose Help Hope Live through word-of-mouth from another parent facing similar obstacles. Upon further research, I found that Help Hope Live has assisted thousands of families just like mine with so much care, concern, and support.

There are a lot of other innovative solutions out there that could make Zoë’s life easier and more fulfilling. However, she doesn’t currently have access to them because we can’t afford them. Insurance will only cover the basic and bare necessities, leaving Zoë with unmet needs.

Zoë is outdoors on a blacktop seated in a black push-able wheelchair. Zoë has brown skin, textured black hair in braids, and brown eyes. In soft sandals, her toenails are painted pink.

Reaching our fundraising goal will mean being able to continue all of Zoë’s therapies and give her even more comfort and support within our home and family.

Community support goes beyond financial help. I am the only adult in my household raising two kids with significant medical needs and two toddlers. It’s hard, and sometimes it feels like our family is experiencing one catastrophe after another.

There are times when Zoë spends weeks or months at a time in the hospital. Those are the toughest times for our family, because I’m not able to be there to take care of everything for my other children. That is when those around me step in, whether that is providing rides to school or a home-cooked meal, or just an outing so that the other kids can take their minds off what is going on.

Zoë lies in a hospital bed in a multi-colored gown with a smile on her face. Near her sits a sibling in a lavendar hospital gown and hospital socks. Both girls have brown skin and textured black hair.

The emotional support of my community gets us through the hardest days, weeks, and months.

Life is a journey—and I am so grateful to my community and Help Hope Live for being a part of our family’s journey.

In a Christmas family portrait, mom Sierra Dillard and her four children smile in matching holiday-printed fleece pajamas. Sierra has short partially dyed locks, brown eyes, and brown skin. Her eldest daughter has long dark locks almost to her waist, brown skin, and brown eyes and wears a Santa hat. Zoë is strapped into her black mobility device and has brown skin, brown eyes, a huge smile, and textured black hair in braids. Their two youngest siblings have braided textured dark hair, brown skin, and brown eyes.

Zoë Sparks is ready for the season in a holiday portrait. Zoë has brown skin, brown eyes, and textured black hair. She wears jeans, black Mary Janes, and a red-and-white striped shirt and holds a sign that reads Merry & Bright. She is seated in her four-wheeled mobility device with a tartan blanket underneath her. Behind her is a snowy photography set.

Families like ours are impacted by mobility and accessibility issues everywhere we go. We always have to make sure that a location is wheelchair accessible. I feel it’s my responsibility to raise awareness and fight for Zoë and others like her who aren’t able to fight for their own rights and inclusion. We can all join together to fight for inclusion and accessibility for all.

Zoë is ready to bowl seated in her black mobility device with a pink bib. She is receiving help to push a pink marbled bowling ball down a ramp in a bowling alley. Zoë has brown skin and brown eyes and textured black hair.

I wish people knew that while she may look different on the outside, on the inside, Zoë is just like you. She is thoughtful, energetic, and understanding.