Hello everyone,
My name is Taybah, and I want to take a moment to share a deeply personal and heartfelt story about my wonderful son, Al-Yasa, who is 6 years old. This story is both bittersweet, as it encompasses the joy of having him in my life and the challenges posed by his diagnosis—Hunter syndrome, also known as MPS II. In honour of MPS Awareness day this May, I hope to raise awareness about this rare condition that affects our daily lives.
Hunter syndrome is a rare genetic disorder caused by the absence of an enzyme called iduronate sulfatase. This enzyme acts like a garbage collector in our bodies, responsible for breaking down waste products created during normal cellular processes. Without this enzyme, waste accumulates in the body's cells, leading to a progressive buildup that affects various organs and systems.
To visualise this, if you think of a hoarder's house where garbage piles up in every room, it becomes increasingly difficult to function. Over time, the bedrooms, bathrooms, and kitchen lose their purpose due to the clutter and mess. In a similar way, as waste accumulates in the bodies of boys with Hunter syndrome, their organs lose function. This buildup slowly affects their bodies and brains, leading to severe physical and cognitive decline. Tragically, children with Hunter syndrome often do not live beyond their teenage years.
Al-Yasa was diagnosed at just one year old after a challenging start to life; he spent the first three years of his life on oxygen and frequently required hospital care. Every week, he undergoes a four-hour infusion of Enzyme Replacement Therapy (ERT), which has only been available since 2007. While this treatment can help manage symptoms, there is still no cure.
Yet, amidst these challenges, Al-Yasa brings immense joy and laughter to our lives. He demonstrates resilience and happiness that remind me daily of the importance of embracing the moment. As his mother, my perspective has shifted significantly. The fears that once weighed heavily on me have loosened, replaced by a deep trust that life is unfolding exactly as it should.
Despite the difficulties, I've learned to speak love into Al-Yasa’s world through quiet moments of connection and affirmations. There is light, even on the hardest days. His story is about more than just a diagnosis; it’s about the love that transforms everything it touches, resilience in the face of adversity, and the joy of living in the present.
If you wish to support the cause and help raise awareness for MPS, I encourage you to consider donating to the MPS Society. Together, we can make a difference for those affected by Hunter syndrome and other MPS disorders. https://mpssociety.org.uk/donate
Thank you for allowing me to share our journey and for helping raise awareness about Hunter syndrome. Together, we can shine a light on this condition and honour all those affected, including my brave son, Al-Yasa.
With love,
Taybah
