Dialog Box


Fair For Rare: Caleb's Story

I remember the day quite clearly as we sat in the paediatrician’s office in December 2010 trying to understand and make sense of what had just been explained to us about MPS II (Hunter syndrome). The tears continued flooding down my face and I sobbed uncontrollably - I felt my entire world end then and there.


Caleb was only about 18 months old then and I could feel my heart breaking into a million pieces. It was then that we embarked on the task of getting him onto enzyme replacement therapy (ERT), which was a rollercoaster ride. Finally, after campaigning hard and many meetings, Caleb finally started enzyme treatment in July 2013.  


It was all starting to make perfect sense. All of those months of constant visits to the doctor with Caleb to treat ear infection after ear infection, numerous doses of antibiotics given, not to mention, the surgeries he’d had to endure.


He was just months old when he had his first set of grommets implanted (still ongoing), followed by a hernia repair, tonsils and adenoids, carpal tunnel repair, a VP… the surgeries don’t stop and it’s all become part and parcel of our daily lives.  


“Get fixed and back on the mend.”  


Even though our lives have revolved around hospital stays and specialist visits, Caleb never fails to surprise me with how resilient and strong he can be! He gives me strength along the way - his beautiful smile and warm hugs can make anyone forget pain and sadness.


We take each day, ‘making it count’ and continue moving forward with a positive attitude and the longing hope that somebody, some day, will make a medical breakthrough and present the world with a cure for MPS II. Until then, we have much to do to keep pushing for awareness and funds to help our scientists get closer to a cure. Sending love from our family to yours.