Henry's Story
On 17th June 2024, we received a phone call that changed our lives forever. Our beautiful son, Henry, was diagnosed with a rare and devastating genetic condition called MPSII – Hunter’s Syndrome. Tragically, Henry has the most severe form, which means his life expectancy will be much shorter than we ever imagined.
In that moment, our world shattered. Everything we thought we knew about life and parenthood was turned upside down as we were thrown into an overwhelming medical journey filled with endless hospital visits, tests, and procedures for Henry.
This last year has been nothing short of horrific. We’ve witnessed our little boy endure things no parent should ever have to see their child go through.
- We’ve watched him in pain.
- We’ve watched him be put to sleep for procedures, time and time again.
- We’ve watched him face countless needles and have a port fitted in his tiny chest.
- We’ve watched him endure 48 infusions—that’s roughly 290 hours of being attached to a drip, needing to stay still on a hospital bed.
It has been a relentless, heart-wrenching journey.
While we’ve shared small snapshots of Henry’s medical journey on social media, the reality is far more difficult and painful than words can express. The challenges and heartache that come with MPS are unimaginable.
And yet, amidst all of this, Henry continues to amaze us. His strength and resilience inspire everyone around him:
✨ He still smiles after every infusion.
✨ He lights up the room with his laughter, making his family, nurses, and friends smile too.
✨ He continues to enjoy nursery, play with his friends, and live as much of a “normal” life as he possibly can.
As parents, we are learning to live with the uncertainty. We don’t know what the future holds for our brave little boy, but one thing is certain: we will never give up on him.
Through all the heartbreak, we’ve been deeply moved by the love, care, and support we’ve received over the past year. From our family and friends to our colleagues, and the incredible nurses at Birmingham Children’s Hospital—your kindness has been a lifeline.
MPS is such a rare condition that, a year ago, we had no idea it even existed and now we leave a seat at the dinner table for it daily.
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