My name is Vanessa, and I am the mother of a beautiful little boy named Rick, who was diagnosed with Infantile Tay-Sachs disease at just 18 months old. The day we received the diagnosis, doctors told me his life expectancy was 2 to 4 years. My world collapsed. My heart shattered. And yet, I’ve spent the last 2.5 years holding onto faith, searching endlessly for anything that could give him a chance, even the smallest hope of a better quality of life.

I never gave up. But the truth is, I’ve watched my son slowly lose every ability he once had. Month after month, through countless hospital admissions, I have seen him decline. There were nights when I didn’t know if he would still be here the next morning.

Rick turns 4 in February 2026.

Every day that he is still with me is a miracle, and every day, I wake up and fight for him as a sole parent, full-time worker and full-time carer. Most nights, I sleep only a few hours, if that. I work with exhaustion in my bones and fear in my heart, masking the pain so I can function.

But inside, I am a mother terrified of losing her child.

There is no treatment available in Australia. Rick is the only child in the country with Infantile Tay-Sachs. The only therapy offering comfort, stability, and possible improvement for him is at a specialised clinic in Italy, and this may be his last chance. Through God’s grace, I met a mother in Brazil whose child, also suffering from a neurodegenerative condition, had his life transformed after receiving treatment at this very institute. This therapy does not cure Tay-Sachs, but it helps regenerate healthy cells, bringing more comfort, stability, and potentially extending life when done consistently.

What Rick Lives With Every Day
Tay-Sachs is a cruel and devastating disease. In just 2.5 years, I’ve watched it take almost everything from him:

• He can no longer see or hear.
• He has no motor development — he cannot sit, move, or hold his head.
• He has not been able to swallow food or saliva since 17 months old and is fed through an NG tube.
• He needs constant suctioning, day and night, so he won’t choke on his secretions.
• His gut motility has deteriorated so much that he can only pass stools with nightly gut irrigations.

I haven’t slept much through the night in over four years because Rick requires round-the-clock care. And I would do it all over again because he is my world, my miracle, and God’s greatest gift. He gave my life meaning, and being his mum is the greatest blessing I have ever known.

The Only Hope: Treatment
Overseas The Istituto Rinaldi Fontani in Italy offers a specialised therapy cycle that has helped improve the quality of life of many children with severe neurological conditions. After speaking with the medical team and other parents, I truly believe this treatment could give Rick:

• More comfort
• Better pain and symptom management
• Improved quality of life
• Stabilisation of his condition
• And, most importantly, more time with me

While NDIS supports his daily needs in Australia, they cannot fund any overseas treatment. To bring Rick safely to Italy requires significant preparation: specialised travel, equipment, accommodation, and medical support.

Total Cost Breakdown (AUD)
• Treatment (1 cycle, 48 hours): ~$14,000
• Flights (medical travel): ~$30,000
• Accommodation (approx. 6+ weeks): ~$10,000
• Travel medical insurance: ~$400 per person
• Food: ~$3,000 • Additional medical & invisible costs: ~$10,000 Total Needed: $60,000 for one treatment cycle
As a single mother and full-time carer, this is far beyond what I can afford alone. But together, I know we can make this happen.

Why I’m Asking for Your Help
I fight every single day to keep my son alive. I am determined to give him every chance possible, even when the system cannot support treatment overseas. This trip could give Rick:
• A higher quality of life
• Relief from daily suffering
• More stability
• The possibility of slowing down degeneration
• And the most precious gift of all: more time here with us
Your donation, big or small, brings us closer to this lifesaving journey.
If you cannot donate, please share Rick’s story. Awareness alone can change his fate.

From My Heart to Yours
Thank you for reading, for caring, and for holding space for Rick’s story.
The truth is: I cannot do this alone. Your kindness, generosity, and prayers mean more than you will ever know.
Every message, every share, every contribution brings hope back into our home.

With all my love and gratitude,
Vanessa & Rick