What's Happening?
Tammy McDaid, a mother from Swansea, is facing heartbreak as her four-year-old son, Tate, has been diagnosed with Sanfilippo Syndrome, a form of childhood dementia. This rare condition, also known as Mucopolysaccharidosis type III, leads to the gradual
loss of abilities such as walking and eating. Tammy is determined to make precious memories with Tate, who is not expected to survive to adulthood. She has set a fundraising target of £11,000 to potentially enroll Tate in clinical trials abroad, aiming to slow the disease's progression. Despite the challenges, Tammy describes Tate as a happy and content child who enjoys simple pleasures and has a contagious smile.
Why It's Important?
Sanfilippo Syndrome is a devastating condition with no current cure, affecting approximately 140 children in the UK. Tammy's efforts to raise funds for clinical trials highlight the urgent need for research and treatment options for rare diseases. Her story underscores the emotional and financial challenges faced by families dealing with such diagnoses. The support from the community and organizations like the Ty Hafan children's hospice provides a glimmer of hope for families seeking to improve the quality of life for their children.
What's Next?
Tammy is actively seeking clinical trials through the Cure Sanfilippo Foundation, as Tate approaches the age where symptoms typically worsen. If trials are not accessible, she plans to use the funds raised to travel with Tate, creating lasting memories. The next year is critical for Tate, and Tammy is focused on finding opportunities to slow the disease's progression and maintain his mobility for as long as possible.
