Hope for Hartley

#HopeforHartley

We’ve created this page in support of Hartley Jayne Gunn and her family. Please take a moment to read more about Hartley’s story written below by parents, Jess and Steve.

Hartley was born on May 6, 2025 and is one of approximately 1,500 people worldwide diagnosed with CDKL5 Deficiency Disorder. Her condition requires extensive physical, occupational, and speech therapy, along with specialised care to support her development and wellbeing.

If you know the Freeman-Gunn family, you know what a blessing they are to everyone around them. Hard-working, genuine, and generous people. While Steve and Jess were initially hesitant to share Hartley’s story, they recognise the importance of raising awareness and the power of community support in giving Hartley the best possible chance, especially given the financial resources required.

All funds raised will go directly towards Hartley’s medical care and support, as well as research into CDKL5. Thank you for your kindness, support, and consideration.

Hartley’s Story

"Our precious little girl, Hartley, has recently been diagnosed with CDKL5 Deficiency Disorder, one of the rarest and most devastating genetic conditions. CDKL5 causes hard-to-control seizures that begin in infancy, often daily and sometimes in double figures, robbing children of peace and rest. It doesn’t stop there; CDKL5 brings severe developmental challenges, meaning many children never learn to walk, talk, feed themselves, or live independently. It can also cause vision problems, scoliosis, low muscle tone, breathing and sleep difficulties, and for most families, it means lifelong, 24-hour care. At this time, there is no cure and no treatment.

Hartley’s seizures began when she was just 8 weeks old. Since then, our world has been turned upside down. We have watched her tiny body endure battles no baby should ever have to face and yet our love for her has only grown stronger, if that was even at all possible. Through every seizure, every hospital stay, and every setback, Hartley shows us a courage far beyond her years.

This diagnosis has shattered us, but it does not and will never define her. Hartley is still our perfect little girl, pure light, love, and resilience wrapped into one tiny soul. We long for the day we hear her voice, demanding the world like her brothers do, and we dream of watching her perfect little toes dance in the sand on Bondi Beach.

Hartley is so deeply loved. Not only by us her mum Jess, dad Steve, and big brothers Reggie and Teddy but also by her grandparents, aunties, uncles, cousins, and the extended family we’ve been blessed to make here in Australia. She is surrounded by love in every direction, and it’s that love that will carry her through.

As her parents, we are determined to give Hartley the very best chance in life. That means surrounding her with the therapies, medical equipment, hospital care, and support she needs to reach her fullest potential. It also means fighting for her future, for research, and for awareness of this cruel condition.

The road ahead is going to be incredibly hard emotionally, physically, and financially. Hartley may need lifelong care, and the costs involved are overwhelming. Because we are still awaiting permanent residency, we are not entitled to any NDIS benefits. This makes the financial burden even heavier, but we remain committed to continuing our Australian dream building a life here and giving all of our children the very best chance in life. Every single donation will go directly towards Hartley’s treatments, therapies, and the resources she needs, and will help relieve the immense pressure on our family as we navigate this new world.

We want Hartley to grow up surrounded by possibilities not limitations. Even though CDKL5 is rare and relentless, we believe that with enough love, support, and hope, we can help her achieve so much more than anyone dares to expect.

From the bottom of our hearts, thank you for standing beside us, for believing in Hartley, and for helping us give her the brightest and most beautiful future possible.

Love,

Jess, Steve, Reggie & Teddy"

#HopeforHartley