Tag Archives: local radio

Perfect Faces for Radio

Looking back this evening at some of the photos taking up the precious memory that’s left on my phone, I’ve realised that there have been so many things that I haven’t quite got round to sharing with my blog. As you’ll have noticed, my foray back into the world of full-time work after being made redundant almost a year ago has meant that I just don’t have the time to dedicate to writing 2 or more blog posts a week, but I still want to share many of our recent experiences and so the updates may take just a little longer to arrive on your screens than before.

The first looks back to May, when every year we mark National Eosinophil Awareness Week and for the last 4 years, a big part of my campaign to raise awareness has involved live appearances on our local BBC radio station, talking all things EGID and answering questions surrounding the inevitable interest about M’s extremely restricted diet. Whilst it is always a challenge to think on my feet and answer questions without any prior warning about what the presenter might ask, I relish the opportunity to spend 20 minutes speaking about EGID and what it means to our family to live with it day in, day out to those listening within our regional broadcast area. I have spent 5 years being extremely grateful to those within the EGID community who have been honest about their experiences and take the time to support those who are newly diagnosed and often looking for an understanding that the medical community jut can’t offer. Sharing our story, both through my blog on a regular basis and through these occasional newspaper articles and radio appearances, are my way of giving something back to our EGID family, new members and old.

This year I wanted to change the dynamics of that radio interview if I could and so asked if I could bring G and M along to our local BBC studio to talk about what living with EGID means to them. The radio presenter and his team were more than happy to agree and so it was that on one rather glorious Monday morning, I found myself heading into town with an excited M and somewhat apprehensive G in tow. They had slight nerves that they didn’t know in advance what questions might be asked, but M had sought advice from his Stagecoach drama teacher the previous week and was confident that he knew how to develop his responses to any closed answer questions to avoid giving one word answers. I’ll be honest, I did have some concerns about both children speaking live on local radio: I wasn’t convinced that G would break from her current monosyllabic, teen state and had absolutely no idea what might come out of M’s mouth at any moment. In both cases, I would be hard pushed to exert any sort of control over them once we were on air, except by thoroughly preparing them on our car journey there and then reminding them of my expectations through meaningful glances and subtle eyebrow raises across the microphones!

To my delight, both children were absolute stars and whilst, unsurprisingly, M took to the experience like a duck to water, even G found her confidence to answer some of the questions and we had only one awkward silence to contend with during the 20+ minutes of our appearance. The children spoke clearly and slowly to make sure they could be understood and took their time to give well-thought out answers without leaving the listeners waiting for the dead air to be filled. They both loved every moment of it and have expressed an interest in finding out more about possible future careers that would see them working for the BBC, though G was fascinated by the research being done for the different news programmes and M has a yearning to explore the life of a TV camera man. My big thanks go to our local radio station who were prepared to take a chance on interviewing G and M live on air and for giving us, yet again, the opportunity to spread the word about EGID far and wide.

The 12 day countdown…

13100674_10153433365696123_5191707647482858646_nIt’s hard to believe that we’re already at the start of May, which means that in just 12 days time, it’ll also be the start of National Eosinophil Awareness Week 2016. For me, every year seems to follow the same pattern:

  • At some point in late February/early March I realise that #NEAW16 is approaching and think I probably ought to do something about it…
  • Mid-March arrives and I finally get round to discussing with M and G what they think we should do this year to raise awareness of EGID and might even make some notes…
  • April begins and I realise that time is flying past far quicker than I imagined it would and begin to mildly panic about getting started on our preparations…
  • End of April and, depending on what I’ve managed to arrange thus far, I suddenly go into full-blown melt-down and panic mode as I realise that the start date is just around the corner and absolutely nothing is ready!

This year has been even more hectic than usual and not just because of the additional efforts needed in coping with M’s broken leg and what looks to be a rather nasty flare-up of his EC as a result of it. Between the children and I, we’ve determined to make this year’s Awareness Week bigger and better than ever before, which meant starting much earlier than usual too. In the past week I’ve organised, arranged and pencilled in dates for various events and whilst some will be happening ahead of May 15th, there are others planned for the week itself. Our current plans include:

  • a stall at our local Scouts’ May Fair, raising awareness and money
  • an article in our local paper all about our plans and an update on where M is a year on since the last Awareness week
  • yet another interview on our local BBC radio station, who are willing and delighted to have me in talking all things EGID for the 3rd year in a row
  • M and G have written, illustrated, filmed and directed a brand new video for #NEAW16, which I will be posting a link to in due course
  • M is in discussions with his Headteacher and is hoping to have display boards up in the school hall or library during #NEAW16. He has also planned some lunchtime games to raise some money for Over The Wall, our chosen charity for this year, and wants to show his presentation during an assembly too
  • a stall at our local market at the end of #NEAW16, again an opportunity to get information out there about EGID as well as fundraising once again
  • Mike, G and I have all committed to “Eating like M” for the week, which is the first time that G has wanted to be fully involved and will require lots of inspirational cooking from me
  • Finally, I have committed to attempting to post a new piece of information about EGID, be that fact, photo or update, via my FB and Twitter feed throughout May – and have given fair warning that I’ll be doing 13124538_1016891105068739_2619415221843487211_nso!

Over the next few days, profile pictures across FB and Twitter will slowly turn purple as those families living with EGID around the world start to raise awareness of this chronic illness. It won’t just be me posting facts and information to share with families and friends about how it impacts on everyday life, but others will be doing it too. So, if you see a post, or a blog, or an update that particularly resonates, either from me or someone else, please share it on and help us reach another person who has perhaps never heard of EGID before.

We have decided to support Over The Wall and their serious fun camps through our fundraising this #NEAW. If you’re able to donate even a very small amount, you can follow this link to my JustGiving Page and help us to help OTW make a difference to another child with a chronic illness and their family.

“So much time…

...and so little to do. Wait a minute. Strike that. Reverse it…”

                                                          – Willy Wonka, “Charlie and the Chocolate Factory” (Roald Dahl)

This past week has been busy and there’s still lots more to do, not least of which is a proper blog post.  However, the reality that is choir rehearsals,..SATS revision,..sunflower growing,..Anglo-Saxon house building,..SATS revision,..CAMHS appointments,..food-trialling,..SATS revision and May Bank holiday trips to Legoland Windsor for “Star Wars Day” as well as time spent prepping for EGID awareness week with Powerpoint presentations to perfect and conversations with local media to be had, means that this week’s posts have gone by the wayside, so instead here’s a small photo round-up to give you a taster of all the fun we’re having:

An early start to Awareness week

local_radio_graphicNational Eosinophilic Awareness Week started today, but my bid to raise awareness of this rare condition in fact started on Friday afternoon.  Last year, Mike and I looked to raise awareness amongst our work colleagues, so my plans for this year obviously had to be bigger and better and I started by e-mailing the local press to see if anyone would be interested in running our story.  To my delight, late last Wednesday I was invited to appear on our local BBC radio station to talk about M, EGID and coping with the daily battles we have to face, including cooking for a child with multiple food allergies.  I accepted the offer and Friday afternoon saw me heading into the BBC building with a batch of freshly baked M-friendly cupcakes to share with the presenter and other guests.

 

10348778_10152049176741123_2166202480088495019_oThe cakes were well received, even by the security guards, who were keen to find out more about why I was bringing the cakes into the studio and enjoyed the M-friendly treats I left with them after the show. It was an amazing experience and I can’t thank our local radio enough for giving me the opportunity to get the message about EGID out into our community.  I was able to share, both on and off air, a little about the challenges those of us living with EGID have to deal with and the prognosis for M and children like him.

But, our Awareness week activities don’t stop there.  This time last year, I wrote about our decision to “eat like M” during the week:  one year on and we’re repeating the experience, although we have the added challenge of dropping raisins, raspberries and potatoes out of the diet too.  Actually, this isn’t as tough for me as it is for Mike – I’m not a big fan of raisins and can’t eat potatoes at all due to my own intolerance to them.  We have some more awareness-raising events planned for the week ahead, but for now, I’ll leave you with our meals for the day:

M

Me

Mike

Breakfast
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Free=from rice pops
  • Rice milk
Lunch
  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy mayonnaise



  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy garlic mayonnaise
Dinner
  • Rice bread toast (2)
  • Peanut butter
  • Orgran tinned spaghetti
  • Apple (1/2)
  • Cucumber

 

  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)


  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)

 

Snacks

 

 
  •  Dried apricots