My name is Tess, and I am the proud mother of two beautiful boys, Boston and Baxter.

Baxter appeared to be a healthy baby, but at just 4 months old he began losing developmental milestones. After months of testing, we received the heartbreaking news that he has an extremely rare spontaneous genetic condition called CAMK2D. Baxter is the first known person diagnosed in Australia and only the ninth known case worldwide, meaning there is very little medical knowledge to guide his future. He also has craniosynostosis, which will likely require reconstructive skull surgery, along with hypotonia, significant developmental delay, and complex medical needs.

At almost two years old, Baxter cannot walk, crawl, talk, or feed himself. He requires constant supervision, assistance, therapies, and advocacy every single day. As his full-time carer, I coordinate all of his appointments and provide around-the-clock care while also raising his older brother, Boston.

Although we receive NDIS funding, the 7 hours of weekly respite we have been approved for does not come close to meeting the reality of caring for a child with such complex needs. The physical and emotional demands are immense, and our greatest need right now is ongoing support through a nanny or caregiver who can help us provide Baxter with the care, consistency, and opportunities he deserves while allowing me to continue caring for both of my boys.

Funds raised will also help purchase specialised equipment to support Baxter’s mobility, comfort, and development as his needs change over time.

Every donation, no matter the amount, will directly help improve Baxter’s quality of life and provide our family with the support we desperately need. If you’re unable to donate, simply sharing our story would mean the world to us.

Thank you for believing in Baxter and walking this journey with our family.

With gratitude,

Baxter and Family

x