Campaign by Story
My son, Tate, has Sanfilippo Syndrome Type A (MPS IIIA), a rare, terminal neurodegenerative disease, often described as childhood dementia. Without treatment, he will progressively lose the ability to communicate, learn, walk, eat independently and, ultimately, his life.
Just4Children have created this campaign to raise the funds needed to give Tate the best possible chance of accessing UX111 (if approved and clinically appropriate), or any other disease-modifying treatment that offers him the best opportunity to slow or halt the progression of his condition.
Funds raised through this campaign are intended to cover the full cost of Tate’s medical journey, including but not limited to:
• Gene therapy and other disease-modifying treatments.
• Hospital, consultant and specialist medical fees.
• Diagnostic tests, scans, laboratory investigations and medical assessments.
• Surgery, procedures and inpatient or outpatient care.
• Prescription medication and specialist medical equipment.
• Overseas treatment where required.
• Travel and accommodation directly associated with accessing treatment.
• Follow-up care, rehabilitation and ongoing medical monitoring.
As Sanfilippo Syndrome is a progressive condition, Tate’s needs will continue to change over time. If disease-modifying treatment is not available, is no longer clinically appropriate, or is unable to benefit Tate, funds raised through this campaign are intended to support his ongoing medical needs, including specialist equipment, communication aids, mobility equipment, respiratory support, home adaptations, therapies, palliative care, and any other clinically recommended interventions that maximise his comfort, safety and quality of life.
As research continues to evolve, the exact treatment pathway, provider and location may change. This campaign is therefore intended to support Tate in accessing the most appropriate medical treatment and care available throughout his journey.
I’m not a medical professional or expert. I’m just Tate’s mum. I’m a solo parent doing everything I can to give my little boy a chance at a future that, right now, this disease is trying to take away from him. Every donation, every share and every word of support helps me keep fighting for him. From the bottom of my heart, thank you for standing with us and giving Tate hope.