Emily and MyIntegra

Jessica never imagined her life would take the path it did.

Her daughter Emily was just five when subtle signs began to appear - hesitation at doorways, missed developmental milestones, and eventually, seizures.

At seven, Emily was diagnosed with Batten's disease, a rare and regressive neurodegenerative condition. The diagnosis was life-altering.

“I don't think anyone ever imagines that their child's not going to get better,” Jessica shared.

Over the years, Emily gradually lost her ability to walk, talk, and eat. Yet through it all, she remained a source of joy and love, especially to her mum.

Navigating the National Disability Insurance Scheme (NDIS) became a necessity, and a challenge.

Emily’s needs were complex and constantly evolving.

Each change in her condition meant reassessing supports, updating plans, and coordinating with multiple providers.

For Jessica, the administrative load and emotional toll were immense.

“Emily’s plan became quite complex because her condition is regressive and it does change,” she explained.

“Then we're needing to change her supports and change her plan.”

Emily is seated in a specialized wheelchair with pink head supports and a soft pink bib, facing an adult who is partially visible. The image focuses on Emily’s assistive equipment, emphasizing care for children with high support needs.

Jessica stands beside Emily, who is seated in a specialized wheelchair with pink head supports, alongside a MyIntegra support coordinator. They are outdoors on a sunny day with greenery and a pond in the background, symbolising family and disability support.

Donna, a support coordinator with MyIntegra, became a vital part of Jessica and Emily’s journey.

From the moment she met Emily, Donna was struck by her presence.

“This beautiful little girl with blonde hair and blue eyes.”

But beyond the initial connection, Donna’s role was to help Jessica navigate the intricacies of the NDIS. Support coordination, she explained, goes far beyond linking participants with providers.

“We are often that first person that the parents turn to. We find we're holding space for those people that are on a really difficult journey in their lives.”

For Jessica, having Donna’s support meant more than just managing paperwork. It meant having someone who understood the emotional weight of caring for a child with high and changing needs.

“Having Donna’s support through MyIntegra has helped us,” Jessica said. “It takes that layer of stress away from my life.”

Through MyIntegra, Jessica gained access to plan management and support coordination services that helped her make informed decisions, adjust Emily’s supports as needed, and focus on being a mum.

Donna’s approach was grounded in empowerment to arm families with knowledge and helping them build capacity to live life on their terms.

“The goal is to support these vulnerable people as best we can,” Donna said.

“Jess is an amazing example to all parents who have children with disabilities.”

Jessica and a MyIntegra support coordinator sit at a wooden table with coffee mugs, reviewing information on a laptop. The setting is a bright, open space with scenic views outside, representing collaboration in managing complex NDIS plans.

Jessica gently holds Emily, who is wrapped in a pink blanket and seated in a wheelchair with pink head supports. A soft toy rabbit rests on Emily’s lap. The scene is set outdoors with lush green lawns and mountains in the distance, highlighting love and care in disability support.

Today, Jessica continues to advocate for Emily, ensuring she has the supports she needs to live with dignity and joy.

Emily, despite the challenges she faces, still finds ways to connect.

“She can look into my eyes and just give me this look that she adores me,” Jessica said. “She’s just such a beautiful little girl, and she brings joy to so many people’s lives.”

Looking ahead, Jessica remains focused on giving Emily the best quality of life possible.

With MyIntegra by her side, she feels supported, informed, and less alone.

The journey is not easy, but it’s one filled with love, resilience, and the kind of support that makes a real difference.