Tag Archives: raising awareness

OTW Siblings #Take Two

This time last year, this happened:

and since the start of February, when the email finally arrived in my inbox confirming that G would once again be heading off to the depths of Dorset for the fabulous Over The Wall South Siblings Camp, the clock has been counting down. I’m surrounded by reminders of this amazing organisation wherever I look, from the screen saver on my phone to the calendar on my desk at work and it’s reflected every time I hear G or M, or sometimes both, bursting into a song from their time away at camp.

The next 5 days are going to be busy ones as I wash, iron, sort and pack G’s clothes for next week. We need to make sure she has enough for every eventuality – sunny days, wet weather, swimming, archery, arts and crafts, the talent show and the all important disco. Unlike last year, when she refused to even consider being part of the talent evening until she got there and then taught her team, the totally epic Purple Girls, a dance routine to Omi’s “Cheerleader” track; this year G is torn about which talent in particular she wants to perform. It could be a clarinet solo, which M would love her to do, or it might be a new dance routine, this time with costume. I’ve told her she really needs to have made her decision by the weekend, so I can ensure she’s got everything she wants with her when we set out on Monday. We’re so thrilled that G has the opportunity to benefit once again from the fantastic work done to support siblings of children with health challenges and I can’t wait to hear all about this year’s week away from home with OTW.

You may remember that since G’s adventures with Over The Wall last year, we have been raising awareness and funds for this incredible cause and I created this video to show our reasons for supporting them:

World Prematurity Day 2016

43a5b1be37a6689952d3a3113eaa551dI watched my preemies sleeping last night, curled up together in the back of the car as we travelled home from a long day in London; M with his head on G’s lap and her arm clasped firmly round him holding him close. The image was not too dissimilar to a photo we have from not long after M had been born – with my eldest baby cuddling her very new brother, a protective arm surrounding him then, just as now. They are fast growing up and there’s little left to remind us of their early arrivals in life.

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We were lucky; we are lucky that our premature babies have grown into determined young people, not letting their early starts stand in the way of anything. Some families are not so lucky.

Every year an estimated 15 million babies are born worldwide before 37 completed weeks gestation, with more than 60,000 of those being born in the UK. Premature birth is the leading cause of newborn deaths, the second biggest cause of death in children under 5 and can cause on-going health problems affecting the brain, lungs, hearing or vision. Premature birth takes an emotional toll on the family as they come to terms with a new reality and can cause huge financial strain as parents may have to give up work to spend time in hospital caring for their child.

Today is World Prematurity Day and I am the proud parent of 2 preemies.

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And the money kept rolling in…

Every year when National Eosinophil Awareness Week rolls around, we start thinking about how we’re going to raise more awareness about EGID, particularly in the public eye. During that first year, our focus was all about our awareness as a family and understanding more about how his diagnosis with this rare condition was impacting on M’s everyday life. As time has passed, we’ve looked for different ways to spread the word, reaching out into the wider community and have found that our efforts have naturally evolved to encompass an element of fundraising as well. Whilst the focus of NEAW is rightly about otwmaking sure more people know about this condition and what it means to be living with it, and donations of time are as valuable, if not more so than those of money, we know that any money we can raise will make a difference to the charities we choose to support.

This year we wanted to show our appreciation for the amazing work done by Over The Wall in running camps for children with serious health challenges, their siblings and their families. The truly fantastic week away that G enjoyed at Easter made an incredible difference to her, perhaps even more than we realised at the time. During a recent conversation with G and M about the Allergy UK Hero awards, we got to discussing the reasons why we might nominate each other for an award. To my surprise G stated that my efforts at finding out about and then sorting out her week away at camp was the best example of how I had made a significant difference to her life as an allergy-sufferer and sibling to a chronically ill child. That comment, for me, sums up just how significant the opportunity to have time away from the stresses and strains of life at home with M and to just be a child really was to her.

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During May, I started to document how our fundraising efforts were going and the different opportunities I had found to raise even more for our chosen charity. We had fantastic support from M’s school, who helped him raise an incredible £81 for OTW and through stalls at local community events and generous friends and family members, we raised another £172. Even better, we still have two fundraising plans in the pipeline, both of which came as something of a surprise to me, albeit a wonderful one. The first came when we were part-way through NEAW16, when I received an unexpected phone-call from the Head of Year 7 at G’s secondary school. Thanks to the continued support from our local press and a well-timed article in the local paper, she had a proposition that overwhelmed me and almost rendered me speechless. Year 7 had an enrichment week coming up after May half-term and, as a lead-in to their week of activities, the year group would be having a non-uniform day on the previous Friday. Her suggestion was that the school would use the day to help us raise awareness of EGID and that the money collected on the day itself would be donated to OTW. indexThe reasoning behind this plan was simple and easy to understand: G and M. They wanted to show support to G as one of their own and, knowing how much she had benefitted from her week away and recognising her commitment to supporting M during NEAW, believed that this was the perfect opportunity to do it.

I was more than happy to agree to this proposal and G was soon on board too. She was asked to write a small piece about EGID, NEAW and OTW that would be shared during tutor time on the Friday morning and each tutor was asked to show their group the short film G and M had created for the week. A well-researched, well-written and fully comprehensive letter was sent out by the school to all families explaining EGID and the charity that the money given on the day would be going to.

This week a cheque was presented to G during the weekly Year 7 assembly for an amazing £280, or thereabouts. The Year 7 Head told me that there were several donations made that exceeded the suggested £1 because the funds are going to a charity that have already helped G and M – something I can’t thank my fellow parents for enough. This money will make a difference to Over The Wall and it’s great to feel that we’re giving a little back. It means that so far we’ve raised an astonishing £530, or thereabouts, which covers half the cost for a child to attend the OTW sibling camp. I don’t know what our final fundraising total for this year will be as there is still one event left to go in August, but I’m glad that we have been able to make such a success of our efforts so far.otw

NEAW 2016 – All over for another year

With a blog post a day for the last 7 days as well as daily mini fact updates via my FB page, you’d think that I’d be glad that the EGID awareness week has finally drawn to a close. There is, I admit, a certain relief that the busyness of the week is over and I can at long last pause and take a breath, but just as EGID is a constant presence in M’s life, so raising awareness of it will continue to be an important part of our family’s life. A good friend and fellow EGID Mum has asked me to share her reflections of last week, which I am delighted to do as, as she says in her final line, “Knowledge is important this week and every week.”

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National Eosinophil Awareness Week 2016,

A time to share personal experiences,

Taking time to tell others what it’s like to live with or care for someone with an Eosinophilic Gastrointestinal Disorder (EGID)

Inviting those who have never heard of EGIDs to find out more,

One way to help raise awareness,

Not for self but for others as we are,

All in this together, the EGID community, so,

Let me tell you a little bit about what it’s like to be the mum of a child with EGID.

 

Elevated levels of eosinophils in the gastrointestinal tract are often disorder indicators,

Often this will mean that there will be pain and possibly inflammation,

Sometimes this will mean that there is a need to exclude foods; sometimes many, sometimes all,

Ige or non-IgE mediated food allergies may also be present, but not always!

Naso-gastric tubes and elemental nutrition may be the only way to manage symptoms,

Often the only option for many is a feeding tube as the body struggles with food proteins,

Pain, discomfort, nausea, altered bowel habits are just a few of the symptoms,

Hospital visits, hospital stays, invasive tests, medications and restricted diets become a part of life,

Illness can be socially restrictive; days, weeks or months may be lost to ‘flares’,

Life can be difficult for those diagnosed with EGIDs.

 

Awareness aids understanding of EGIDs,

Watching what you eat, if you are able to eat, is central to managing symptoms,

Avoiding known triggers, being a food detective, scrutinising labels, are also key skills that need to be developed,

Research is important; finding a cure and raising awareness of what it’s like to live with an EGID,

Education is also key to raising awareness and understanding of the impact of EGIDs,

Networks are central to enabling those with EGIDs to feel supported by those who understand

Eating … when food is the issue, is an issue …,

Support from others; a community of people who understand what it’s like when someone is diagnosed with an EGID is so important,

Societal understanding though will help those with EGIDs to engage more with their communities.

 

We hope for a future where the disorders are better understood, when we don’t have to fight to be heard,

Enabling those with an EGID to share their experiences with others can help this,

Eventually we hope for a cure or better ways to manage the disorders,

Knowledge is important this week and every week; please take a moment to read some of the stories shared by those living with EGIDs.

NEAW 2016 – Giving from the heart

I can’t deny that this week has been a busy one, in fact, given we started our #NEAW campaign at the start of May, the whole month has been non-stop and it’s not showing any sign of slowing down just yet. The last couple of days have been particularly amazing and I’m still buzzing from the success of a combination of planned events, chance e-mails and an unexpected phone-call.

Today has been a real highlight for me. A few weeks ago, M asked the Head of his school whether as well as showing his EGID video as part of a whole school assembly during #NEAW, IMG_0460[1]he could also organise some break-time games to raise some money for Over The Wall, our chosen charity for this year. Having received the go-ahead, it was all systems go at 7Y2D HQ and M recruited some of his friends to help run the games on the day, whilst I put my thinking cap on to come up with some games that would appeal to the children as well as raise some awareness of EGID. We settled on 3 different games: Guess the name of the dog – he was called Phil after those pesky eosino-phils that cause all the problems; Guess the number of sweets – these were Foxes Glacier Mints as they are the only safe sweets M is able to eat and were crammed into one of his feeding bottles and the Eosinophil Treasure Map – find the eosinophils on the body to win a prize. I arrived at school ahead of morning break to set up the room and my helpers, including M in his wheelchair, turned up just ahead of a throng of excited children, eagerly clutching their money ready to have a go at the game of their choice. It proved to be such a roaring success that the queue was out of the door and I was asked if it was possible to come back for another 30 minutes during the lunch-hour, which of course I was delighted to do. In the end, I spent an hour and a half talking to a number of children about M’s condition, what we were raising money for and answering their questions as they thought of them as well as supervising the games. The school raised an amazing £81.30 for the charity and I am incredibly grateful for the support of parents, children and teachers alike who made the day such a huge success.

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There are some more amazing fundraising opportunities coming up and I will be updating my blog as each happens.

Of course, we are delighted with the success we’ve enjoyed so far, but the giving is about so much more than the money we’ve raised for a fantastic charity. Earlier this week, FABED asked for a donation that comes from the heart and will have a long-lasting impact: the gift of time. The gift of 5 minutes to read more about EGID; the gift of the time it takes to share a blog post or information on social media to educate those around you about this illness; the gift of spending time talking to a family living with the condition to understand what they’re going through and maybe even offering some time to help them out, even in a small way. Never underestimate the effect of a friendly smile, a sympathetic word or the offer of a cup of tea. To an EGID parent that could be the action that saves their sanity on that day or helps them feel that they’re not fighting this battle on their own. If you can give a small donation that’s great, but your time is priceless.

 

As well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

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NEAW 2016 – The Hidden Truth

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The Hidden Truth:

We may not look sick, but turn our bodies inside out and they would tell different stories

Wade Sutherland

NEAW 2016 – Through the eyes of a child

Last year M decided to create a presentation that he could use to explain EGID and his feeding tube to his school. He and G worked together to produce a video telling the story of the first 9 years of his life, which they then showed to all the classes and took part in 8 separate Q&A sessions to help their peers understand more; something they did with great success. This year my dynamic duo took on the challenge again and decided to work on something completely different. M worked hard to write a story looking at EGID through his eyes, which G then illustrated and, with a little help from me, they have made a video that reflects their understanding of his chronic illness. M has again shown the film at school, although this time it was used in today’s whole school assembly rather than shown to each class in turn. Our aim was to explain EGID in a way that children would completely understand and hopefully would enjoy. We really hope that you enjoy it as much as we loved making it and please share it on to help us raise as much awareness as we possibly can.

 

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

NEAW 2016 – #MoreThanFoodAllergies

The headline in our local paper for this year's #NEAW focuses once again on the allergies

The headline in our local paper for this year’s #NEAW focuses once again on the allergies

I share a frustration with Michelle, one of the lovely co-founders of the FABED, that all too often people living outside of the EGID world get drawn into the food allergies side of this illness and don’t really understand that that is just a small part of a much bigger picture. I can understand why the focus so often falls on it as it’s the bit that people think they understand and can relate to the most. After all, just about everyone knows someone, be it their next-door neighbour, the family down the street or Great Aunt Joan in Australia, who has an allergy. They often feel that that acquaintance, however remote, gives them an insight into what life must be like when your every waking moment is ruled by their presence and I’m all for that belief encouraging them to engage me in conversation about it. Added to that, so much of our social life revolves around food, a fact that isn’t a revelation to me as I’ve discussed it before on my blog. In the last week alone we’ve had to survive the “Second Sunday” breakfast held at our church, sweets brought into school to celebrate birthdays and M’s class cake sale to raise funds for classroom resources. We managed them all in our own way, from arriving late and avoiding the table of food in the church hall, to M’s trusty swap box, which has finally been refilled and returned to his teacher and the gentle request to the TA that the class cakes be moved to somewhere other than next to M’s stationary wheelchair for the day.

Eliminating foods from dietOf course, I obviously can’t ignore the fact that my blog focuses a lot on the impact M’s complex food allergies has on our everyday life. So much of my time and energy is spent researching, adapting and learning more about how to feed him varied meals whilst coping with such a restricted diet that food allergies undeniably rule my kitchen. As a fellow EGID Mum recently posted, every single aspect of our children’s lives are affected by food, no matter how many food allergies they are dealing with. Everything has to be planned and thought about, there can be no leaving things to chance and there’s rarely an opportunity to be completely spontaneous. At home, at school, going out for meals, tea at a friend’s house, family gatherings, holidays, hospital admissions, trick or treating, birthday parties, Christmas, Easter, the list is endless and all-consuming. There’s also unquestionable irony in the fact that we as a family will be “eating like M” to draw attention to the eosinophil awareness week. The reason? I know our restricted diets will allow us to engage with others who will be intrigued by the limitations and in turn that will enable us to share the EGID story too.

However, despite the truths above, it’s really important to get the message out there than EGID is about more than food allergies, a whole lot more. Whilst it’s common for people with EGID to have food allergies, those with allergies do not always develop EGID. At the risk of repeating myself, EGID is, as I wrote for last year’s #NEAW, about “…the unexplained joint aches, the never-ending tummy cramps, the relentless feelings of nausea or reflux whenever you eat. The dark shadows under the eyes, the manic mood swings, the overwhelming lethargy, or the inability to fall asleep and stay that way.  The damaged bowel, the fear of not being near enough to a toilet whenever you need one, or knowing that you’ll never get there in time anyway.  The fear of your friends making fun of your allergies or finding out that you’re still wearing a pull-up because your bowel can’t be relied on when you most need it to.  The daily medicines, restricted diets and the feeding tubes. The chronic pain that can reduce you to tears, yet you don’t complain because nothing helps, even when it’s at its worst.

It’s about getting used to these things as being normal, or not even realising they’re not.”

icebergWe’re marking our 4th National Eosinophil Awareness Week and despite all our best efforts, I still find myself spending a lot of time explaining that there is more to M than his food allergies. This year is a particularly tough one as there is a lot of uncertainty and discussion in the medical community about the validity of EGID as a diagnosis. Hospitals and their consultants are questioning whether EGID is really anything more than complicated food allergies, but they are failing to talk, and more importantly to listen, to the families who are living with it on a daily basis, who are surviving those symptoms I’ve mentioned above and who are having to battle to get their voices heard. Some parents have found themselves in a situation where treatment has been removed suddenly because the veracity of their child’s EGID diagnosis is under review and are left watching their loved ones spiralling back into chronic ill-health whilst the medics argue over whether EGID exists. I can’t predict what the next 12 months will bring for those of us living with the presence of EGID in our families, but I do know, without a shadow of a doubt, that we will all continue to fight for ongoing good health and that every battle won is a huge success.

EGID is about #morethanfoodallergies and that’s a message the world needs to hear.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation will make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

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.

Day 7: Showing a lot of Tubie love!

This is what this week has been about: raising awareness, educating those around us, supporting all those affected by tube-feeding and showing a lot of Tubie love:

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