Life is a Challenge!

By Honeycombebeach

WHAT A JOY AND INSPIRATION!

You all know what happens on a Wednesday morning, it’s the “Girls About Town”  radio programme at Swindon 105.5 - and it’s always great fun to be there with Jo and Clare.  We have a very good rapport and there is always lots of banter - Clare and I particularly tease Jo about the “cheesy links” to the songs chosen, but it’s all very good-natured.

Sometimes we have guests, and this morning we were delighted to welcome Wendy and Heather Skerry into the studio.  I wasn’t involved the last time they came on the programme, but I know from what Jo had said that it is a miracle that Heather was here today.

Heather suffers from epidermolysis bullosa, a genetic condition that in its most severe forms affects all of the body's linings, the skin, the linings of the mouth and oesophagus, and even the eyes.  It causes the skin to become very fragile and any trauma or friction to the skin can cause painful blisters so we were very careful not to hug Heather, which was a great shame, because she was so lovely - but it was just virtual hugs for her this morning.

It was obvious that Heather had been through a lot of pain and discomfort and when she found a lump in her shoulder earlier this year, although she and her Mum, Wendy, were very concerned, they didn’t expect to be told that it was terminal.  However, she was fortunate in that her consultants talked to each other about her condition with the result that she was put on a trial for a new drug, which although they realise won’t cure her, has extended her life already and they hope it will continue to do so for many more years.  It was so refreshing to meet someone like Heather, who was so positive and hardly stopped smiling.

If you thought that having someone like Heather on a radio programme would be all doom and gloom, you would be mistaken, well in Heather’s case anyway.  She was so open and honest about her condition, and told us that when they were told that her illness was terminal, she made up her mind that she and Mum would do all the things they wanted to do, including going to Disneyland Paris with two special friends and Mum was allowed to go too!  Heather told us that they had a wonderful time and she said that she doesn’t expect her friends to “pussyfoot” round her and she is often the butt of their jokes - what a refreshing and wonderful way to live - and such an inspiration, not only to those of us in the studio this morning, but I’m sure to many of our listeners.

Heather told us that unfortunately, because she was poorly, she had to miss an Olly Murs concert she had booked to see, but a group of her friends got together and arranged for her to actually meet him.  We only had to look at the joy and huge smile on her face to know how exciting that meeting was and of course, Jo played at least two Olly Murs’ songs on the programme for her this morning.

Both Wendy and Heather told us that they had been helped so much by a charity called DEBRA, (formerly known as DebRA), an international medical research charity dedicated to the curing of epidermolysis bullosa, with national groups in over 40 countries.  “Debra" is the first name of the daughter of Phyllis Hilton, the original founder of the organisation in the UK, which began as a support group for parents, guardians and carers of other young children with the condition.  There is a charity shop in Swindon dedicated to raising money to help those with the condition and Heather and Wendy  were pleased to hear that Mr. HCB and I often go into the shop, which is very near to Jack’s, our favourite coffee shop.  Having met Heather, I shall certainly be sorting out clothes and other bric-a-brac to take in there - and I might even get Mr. HCB to part with some of his jigsaw puzzles!

Hopefully before I go out this evening, I will have put the Podcast up on the Swindon 105.5 Radio Station’s website - so if you want to hear an inspiring young lady and her Mum, then do listen in.  The link is here and all you need to do is search for the programme “Girls About Town” aired live today,  20th November.  

The only “fly in the ointment” was when Heather told us that not only did they have a Yankee Candle Advent Calendar, but they had also bought a “Pork Scratchings” Advent Calendar from John Lewis!  I was surprised, because I couldn’t work out what pork scratchings had to do with Christmas, but Jo and Clare were dismayed because Jo is a vegetarian and Clare is a vegan - but as we said, it takes all sorts to make a world and it did make us all laugh!

I loved this quote, because it sums up Heather and her Mum, Wendy - they certainly inspired us this morning, shared their joy with us and brought lots of joy into the studio.  We hope they will come back again and tell us about more about their adventures.  The frame on the “selfie” is orange because it’s Heather’s favourite colour and I’ve put a shot of just the two of us in as an extra. 

“We are surrounded by 
     infinite amounts of opportunities 
          to inspire other people and 
               bring total joy into our lives 
                    at the same time.” 
Frank Arrigazz

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