Monte Gray Munro was born on the 5th April 2021. Tragically however, he passed away on the 14th June of the same year.

When Monte was born, it was very clear something was wrong, although a diagnosis took a number of weeks to come to light due to it's rarity. Upon diagnosis, his parents, my friends, Dean and Kirsty, knew their time with Monte would be incredibly short.

The disease is rare, affecting between 1 in 50,000 to 1 in 100,000. In short, newborn babies who are born with the most common form of the disease - X-Linked Myotubular Myopathy - experience severe cough and swallow function and muscle weakness, needing 24/7 nursing, mechanical ventilation to breathe and feeding directly into the stomach. Sadly, these babies rarely live beyond a year. 

I've been friends with Dean for the best part of 30 years and unfortunately had to share a WhatsApp group with him and a number of our closest friends for the best part of 10 years. This period of time has comfortably been the worst thing we've been through as a collective. 

But we've all watched on in awe of how Dean and (especially) Kirsty have stuck together and come out the other side. Since Monte's passing they've even welcomed a little sister to their eldest child, Tallulah. All while Kirsty runs multiple award-winning beauty salons and Dean pretends to work, when we all know he spends most of his time on the golf course. 

After a successful golf event in Monte's memory raised tens of thousands for the Myotubular Trust, we want to build on this and raise as much awareness (and cash) as possible so no parents have to experience the excruciating pain Dean, Kirsty and Tallulah went through.

Please give whatever you can...

To Monte 🍺💙