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,


Forever!


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!


Home to help out


Keshini and her brother Heshan have both moved back home to help out with Roshani (who has MPS IIIB). Their Aunt Kathleen arranges the food shop to come to the house so they can keep Roshani completely shielded. We love hearing stories about families coming together in challenging times. Below is a photo of the whole family. Left to right: Keshini, Aunt Kathleen, Heshan, Roshani, Mum and Dad.


Olivia turned 21


Olivia dropped us a line to tell us all about her birthday festivities, including some great photographs. Looks like a fab time was had by all. Happy birthday, Olivia, and huge congratulations on a wonderful fundraiser! We’re very grateful.


Here’s what Olivia had to say:


“Hi, I’m Olivia and I have Morquio Syndrome. Last month I turned 21! Not only did we celebrate hitting a milestone, but we also celebrated 11 years of Vimizim. Starting the trial for Vimizim at Great Ormond Street Hospital in 2010 has done wonders for my health and it is one of the main reasons I was able to celebrate my 21st in the sun with my friend and family (social distancing of course). I decided to set up a Facebook fundraiser for the MPS society and raised £375. The work the MPS society do is incredible and myself and my family are forever grateful.”


Home infusion


Here’s a snap of the Steven's family receiving their home infusion, featuring a lot of extra precautions! Even in the midst of a pandemic, essential treatment is so important to our members. As you can see mum, Claire, has taken extra care in trying to shield her boys from the virus.


Lockdown chronicles


Sam, who has ML, and some other young adults in the Manchester area have been documenting their time in lockdown:

This short film was commissioned by the Greater Manchester Combined Authority (GMCA) in a wonderful initiative which sought to bring together creative responses to the coronavirus pandemic. It is a message full of hope and positivity, and we’re so proud to see such astounding creativity and great talent!



Lockdown art with the family


We’re loving this picture that Sophie Thomas, Head of Patient Services at MPS Society, made with her family during lockdown. What a lovely memory to have for years to come.



Make a wish miracle: Jack’s wish



"It's a memory I'll treasure forever. To me it felt like there was only me and Jack in the room. It was a beautiful moment"

Jack’s mum Gemma explained that normally, she would get upset around Jack’s birthday, as for them the time draws closer to a day when he may not be with us. Gemma wanted Jack’s 10th birthday to be special as he reached double figures, so she requested Make a Wish to create a special birthday. Luckily, they were able to go ahead just days before the lockdown began. Gemma said it is one of the few birthdays where she has not gotten tearful because the day was so special for them. Jack received a message from Cheryl Cole, he wore a suit and danced with mum, and all of the children who attended were given a teddy with ‘Jack’s prom’ written on it to remember the day.


The story is also on the Make a Wish website.


Read more everyday stories from individuals and families affected by MPS, Fabry and related diseases on our Your Stories blog. If you have a story you want to share let us know, we love hearing from you and sharing your news.


(Rainbow image created by freepik.com)

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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MPS Society, MPS House,

Repton Place, White Lion Road,

Amersham, Buckinghamshire,

HP7 9LP, United Kingdom

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© 2020 Society for Mucopolysaccharide Diseases