MPS lockdown diaries

Every day, our MPS families live with often challenging situations, and this year has been no different. The COVID-19 pandemic has affected everyone across the UK, and our members have been in touch with their experiences of living in lockdown with MPS, Fabry and related diseases. Keeping a positive outlook is key in times like these, so we’re delighted to share some wonderful poetry, personal stories, birthday celebrations and more from our unique pandemic perspective. Sharing stories is a vital part of keeping our community vibrant and connecting MPS families together, so get in touch to tell us about your lockdown birthdays, fundraisers, treatment days, new hobbies, or anything else you’d like to share. We love hearing from you.

Pandemic poetry

Manahil penned this heartfelt poem as a tribute to the hard work of the NHS throughout the pandemic. Beautiful work, Manihil!

Sacrifice By Manahil Imran

They come in many sizes and shapes,

But not all heroes wear capes.

They help our society whilst it shakes,

But to see their families is what their heart aches.

They are on the frontline, like soldiers,

Even if their workload is as heavy as boulders.

Yet they do not moan or complain,

Because this our country, that they're trying to maintain.

A person who cares for the injured or sick,

Responding to the public, for they're selfless and quick.

Day and night. Night and day,

For their safety, their families pray.

Staying at home is an effortless ask,

Compared to doctors and nurses with their difficult task.

This is a sacrifice that we need to make,

Let us be honest, it's not just for our sake.

Please if you can, save lives and stay inside,

Enough have cried. Enough have died.

It will not be easy, but we can beat this together,

For our heroes because hopefully, this will not last,


DIY hair

One of our very own advocacy support workers, Steve, decided to join millions of people across the UK by having a home haircut and donated the cost to the MPS Society. A gutsy move, Steve! Here’s the photographic evidence…

Penny’s rainbow pasta

We loved this photo of Penny! Sunshine, squiggly strings of pasta and lots of imagination means tons of fun in lockdown!

Jon’s equipment boost

We heard from Lorraine, Jon’s mum, who enjoyed buying new equipment for Jon. They bought mirror tunnels, a blow-up chair and a gym ball. Jon has also been enjoying a foot spa, making cakes and rice crispy cakes – sounds delicious, Jon!