Let's help Lily bloom! ♥️

I am Katie's cousin, Ema, and I have been so fortunate to spend time with our dear Lily and her mom and dad.

After Lily was born, Katie and Liam realized that not only was Lily an exceptional little girl, she was going to have exceptional needs growing up with Chromosome 8p Inverted Duplication/Deletion. Unfortunately, a large number of the therapies and expenses that Liam and Katie will incur in order to give Lily her best life aren't covered by OHIP, and benefits through employment are limited. Knowing Katie and Liam, I know that they are spending thousands of dollars out of pocket each year to give Lily everything she needs, but I'm hoping that Lily's community of family and friends may be able to support the O'Neill family in any way possible.

I asked Katie and Liam to give us an idea of how Lily is doing, and what needs the family may have, and this is what they have said:

Our daughter Lily is a beautiful, resilient little girl living with a rare genetic condition called Chromosome 8p inverted duplication/deletion (invdupdel). This condition affects both the structure and function of her brain, leading to severe developmental delays, physical and cognitive disabilities, and complex medical needs. Despite these challenges, Lily continues to inspire us every day with her strength and determination. She has a cheeky personality, and her long awaited giggles come sparingly but deliver fully. She’ll be celebrating her second birthday this August.

There is no cure for chromosome 8p invdupdel. The outlook for children with this condition varies widely, but for Lily, it means lifelong support, specialized therapy, and adaptive equipment to help her engage with the world around her.

How Your Support Helps

We are raising funds to support Lily’s ongoing and future needs, including:

    •    SMILE Therapy in Burlington, a cutting-edge neurodevelopmental therapy program that offers Lily her best chance to build mobility, communication, and cognitive skills. It is intensive and effective—but costly and only minimally covered by private insurance.

    •    Home equipment, such as adaptive seating, mobility aids, and sensory supports that allow Lily to safely and comfortably explore her environment. This also includes any accessibility modifications and devices as she grows.  

    •    Lily’s Registered Disability Savings Plan (RDSP), which will help provide financial security for her long-term future.

Thank you for being part of Lily’s journey. We are grateful for the support to help give her the best quality of life possible and help her reach her greatest potential. And join us this month in walking 8000 steps for 8p!

With gratitude,

Lily, Katie, and Liam