Tag Archives: fund raising

Exploration through Enrichment

One of the things I love about G and M’s secondary school is the Enrichment week they run in June. Every year the young people are encouraged to explore new activities and opportunities during the week and try their hands at things they perhaps haven’t had the chance to experience before. When G was in Year 7, she opted for Bush Camp – an African-style adventure that involved 4 nights away from home sleeping out under canvas with campfire dinners, quirky showers and earth toilets for her home comforts. If there’s one thing that proves my daughter doesn’t always follow in my footsteps, this choice was it as I am a reluctant camper at best and it would take an awful lot to convince me that this could be considered as a fun week away from home. However, G loved every moment and couldn’t wait to choose her options for both Years 8 and 9.

Whilst G had determined that this year was going to be the year for a week away at pony camp in the Brecon Beacons, M’s choices were limited by the reality that he wouldn’t be able to spend a week away from home. We made the decision right at the start of his Year 7 year, not wanting to put him through once again the trauma of last-minute decisions and the inevitable disappointment that he experienced when we had to conclude that he couldn’t go away to the end of term Year 6 camp last year. We opted that M would be based at home for the week and instead he had to  the activities that he would participate in during the school day.

M decided on Action Adventure, where he got to try his hands at high and low rope courses, archery, building a trebuchet and bush-craft skills over the first 3 days of the week. Day 4 was designated as a community day, which was designed to give the children an opportunity to understand their role in our local community and to give a little something back. Some children did bag-packing at a local supermarket, others chose sponsored activities to raise money for local charities and M’s group of year 7s built wooden bird-boxes to be put up in the grounds of their school.

On his final day, M was keen to join the trip to the Tamworth snowdome, although he was disappointed that he had to ski, rather than being able to show off his rapidly improving snowboarding skills. He has been learning to snowboard since Christmas and has been coming on in leaps and bounds on the artificial slopes. He didn’t find it as easy to ski as he had hoped and the combination of time spent focused on skiing and ice-skating meant that he and his friend slept on their way back home. Both children had a great enrichment week and I’m grateful that this fantastic opportunity has been available for them both to fully experience, explore and enjoy. Not only am I impressed by the variety of opportunities they have to choose from, but the school did a great job of keeping the parents of around 900 students updated about their return home on the final day, which is no easy feat!

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#NEAW2018: E is for Engage

May 26: E is for Engage

It’s a late post tonight, much later that I would have hoped, but I’ve been busy helping out with an anniversary celebration for the charity I’m now working for. It’s been a long day, but a fab one and I’m delighted to now be able to bring you my final post for NEAW.

This week has been, as I expected, a quiet week when it’s come to raising awareness of EGID. There were no big fundraising plans, no local radio interview and no article in our local paper. The children didn’t present anything at school this year and I didn’t plait pink ribbon into G’s hair or attach awareness ribbons to their school bags. Mike and I have stuck to our commitment to eat like M for the whole week and that has certainly led to a lot of conversations with my new work colleagues about M’s diagnosis…and how to pronounce “Eosinophilic”!

I’ve written a blog post every day this week which have been read and shared on by you all and whilst the daily posts will finish now this week has come to an end, I will continue to post an insight and an image on my social media channels right up to the end of month. Life might get quieter on the EGID front for most of you, but please remember that it will continue to be a permanent and unavoidable fixture in M’s everyday.

Thank you for engaging with us this week; for walking part of our journey alongside us and all I ask is that you keep helping us fight the battle to raise awareness of it.

#NEAW2018: T is for Thank

May 25: T is for Thank

To everyone who has supported us over the years. To those who have provided listening ears, shoulders to lean on and helped wiped away tears. To friends who have given time, energy, a chance to get away from it all and, most importantly, a large drink when it’s most been needed. To the communities that have walked each step of the journey with us, whether local, worldwide or virtual. To those who have been part of the blogging process over the last 5 years and continue to read my posts and share them on.

To our family and friends. To our wonderful children. To Mike.

Thank you xxx

#NEAW2018: A is for Awareness

May 24: A is for Awareness

Today is all about raising awareness for EGID. At home we’ve been working on putting together a presentation for the end of June, when G and M will be introducing Over The Wall at their performing arts’ school’s end of year fundraising concert. We are, as so many others around the world, huge fans of the 2017 smash hit and all round wonderful film “The Greatest Showman” and the song “This is Me” had a particular resonance for the whole family. M and I chose this track to be the backing track for their OTW Powerpoint presentation and I decided to adapt what I’d already made for this year’s NEAW to raise more awareness.

#NEAW2018: C is for Change

May 23: C is for Change

The dictionary defines change as “to make or become different” or “an act or process through which something becomes different“, but what does that really mean in the context of raising awareness about a rare disease?

There are so many things that need changing when it comes to EGID, some of which we can actively work towards achieving and others which can be nothing more than a pipedream at the moment. Educating others about what EGID is and how it affects those diagnosed with it will hopefully bring about a change in attitude in both the community surrounding M and the wider medical profession. Even though this often feels like an uphill battle, it is an achievable target and something we should all keep working towards, chipping away slowly at the seemingly indestructible walls that surround EGID as a valid diagnosis. Those changes in attitude will help M feel less isolated by his health problems and more confident in being the unique individual he is despite his EGID and not because of it.

The 12-year road we’ve travelled since M was born has seen many changes and there is no question that there will be many more to be traversed as he grows towards adulthood. He’s gone from an active, can-eat-everything toddler, through a stage of being a tube-fed child taking 13 medicines multiple times a day to now being a tween eating 9 foods on a regular basis, taking 4 medicines plus a multi-vitamin each day and thriving. The next few years of teenagedom will undoubtedly bring a myriad of changes to be navigated, mostly thanks to those pesky hormones, and which will hit us in ways we can’t even begin to imagine. Who knows how treatments and medical breakthroughs will change as he gets older and the best change we can hope for is that his doctors will find a way to improve his quality of life beyond our wildest expectations.

What are the changes that M would most love to see happen?

  • To be eating as “normally” as possible. What he wants when he wants and with no repercussions at all
  • To be able to go without all of his medicines, especially the E028 drink, and not worry that a reaction could be just around the corner
  • And to not feel different, or alone, or set apart from his friends because of a condition that he can’t predict or control, but can just manage as best he can

What I want is not really a change at all. I want him and G to remember that they are able to live life to its fullest, loving and embracing every moment of it and grasping every opportunity that comes their way and making the most of them all.

#NEAW2018: D is for Donate

May 21: D is for Donate

There’s nothing I hate more than spotting a charity canvasser on the street and I’ll happily confess that I instantly become one of those individuals who speed up and drop my eyes down to avoid drawing too much attention to myself if I can help it. It’s not that I’m not prepared to donate to charity – oh how ironic this post would be if I was – but I am definitely not a fan of being pressured to sign up to an ongoing commitment to any one charity whilst out and about doing other things. Part of my problem is that I hate to say no to people and always end up feeling very disingenuous as well as guilty when I come up with a reason why I don’t want to set up a regular donation on the spot.

A cash donation can help, of course it can, but these days I don’t really know what charity to suggest when it comes specifically to making a financial contribution to support those diagnosed with EGID. There are no charities in the UK currently working on research into gastro conditions and few investing time and energy into supporting families living with the consequences of this challenging diagnosis. As long as gastrointestinal disease remains the “poor” cousin to so many other life-impacting conditions, there is little chance of much progress when it comes to finding ways to improve the day-to-day life of those living with it.

However, donation is about much more than just the money. Your time, your care and your support can make an incredible difference to a family living with chronic illness and the impact should never be underestimated. When someone takes 5 minutes to ask how M is doing, and, even more importantly, asking how G and the rest of the family are too, that effort is priceless. At the moment, we seem to be a state of status quo with M’s health which is fantastic, but there is also a sense of overwhelming ennui when it comes to our ongoing relationship with our local hospital and M’s gastro consultant. Taking the time to talk to me about life apart from M’s EGID makes a big difference and should never be seen as inconsequential. We teach M constantly that there is so much more to life than his illness and it’s important that we hold on to that truth and don’t get bogged down in the mundane.

There are, of course, a million and one charities who need financial support and it’s a challenge to choose the cause that’s not only closest to our hearts, but needs that money the most. This year we’re not actively fundraising as part of NEAW, mostly because I only changed jobs a month ago and haven’t found the time to be more organised, but thanks to M’s bold cheek, we have a small fundraiser planned for the end of June. Last year, he asked the founder of their Saturday dance school if this year’s end of year concert could be a fundraiser for the amazing Over The Wall charity and he and G are now working hard on their presentation to introduce the evening. M is thrilled to be attending an OTW Health Challenges camp again this summer and we continue to be extremely grateful for the care, support and opportunities they have given both children. Both OTW and my new role with our local air ambulance have shown me so clearly that whilst the money is important and enables both charities to continue doing their fantastic work, volunteering with them has equal value. At work our volunteers are an integral part of our workforce and the truth is, quite simply, that their daily contribution to the running of the charity cannot and should not ever be underestimated.

Charity Cut

Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you

NEAW2017 – Resilience

Resilience: the ability to become strong, healthy or successful again after something bad happens.

What an amazing quality to possess and one that we’d all to like to develop, especially when times are tougher than we ever imagined they could be. Without a shadow of doubt, the EGID diagnosis has forced us all – and by us, I don’t just mean our family, but all those families living with EGID – to become incredibly resilient, even when we’re dealing with bad situations that have nothing to do with this illness itself. During last year’s NEAW, I wrote about being an EGID Mum and the heartbreak that I had been struggling with because of M’s broken leg and the lost opportunities that resulted from it. This year, the current uncertainty surrounding the validity of the EGID label has once again pushed Mike and me to our limits as we grapple with the challenge of managing the health of our child, physical and mental, whilst also dealing with the unavoidable “elephant in the room” of that unanswerable question mark about his diagnosis whenever we attend gastro appointments that seem to try and avoid using EGID as a valid reason for his current struggles. We are not the only parents who find themselves in this position as conversations amongst our EGID friends and extended family show.

Life has taught me to be resilient, to be a strong woman who’s not afraid to face up to whatever is thrown at me, even if sometimes I need to pause and take breath before I can fully deal with it all. It sometimes feels as if I’ve been put through more than most: my T1D diagnosis on my 9th birthday, losing my Dad before he had a chance to get to know my children and the threat of further sight loss last Christmas; and yet somehow I’ve managed to find my way through it all. As a family we’ve certainly had more than our fair share of chronic illnesses to contend with – T1D, EGID, Cancer, Parkinson’s, MS, Alzheimer’s disease to name a few – but they’ve taught us all one thing: that we can survive. In fact we can do more than survive, we can still have positive, purposeful lives and can definitely live and enjoy life to the full.

As a Mum, I’m proud to see the resilience that my children are building themselves, even though it is heartbreaking to realise the reasons they’ve needed to develop this character trait so early on. But their unquestionable resilience to life’s challenges, doesn’t mean that they are immune to the insensitive, hurtful and thoughtless comments of others as became patently obvious this week. M is going through a tough patch right now and we don’t really know why. We expected the anxiety of his SATS last week to affect his gastro health and returned to his simple 6-food diet to try to reduce the stresses on his body. This week has seen a real relapse in many of his symptoms and we’re struggling to see the light at the end of this immediate tunnel. I know, in that way that Mums do, that this change in events was playing on his mind, but I didn’t realise just how much until yesterday.

Yesterday, we were talking about his school year group and in particular, the jokes and insults currently being traded amongst the Year 6 boys. I reminded him that he needed to ignore those comments as best he could and instead focus on the strengths of his friendships and the fun they’re now having that SATS are finally out of the way. It was then that he paused in reflection before saying:

…I know Mummy, which is why I’m sure X was making it up when he said that his Mum had said that she’s sick of seeing me in the local paper all time because I haven’t been and anyways, I don’t think that his Mum would have said that….would she…?

I had to take a moment to compose my own thoughts before giving a careful and considered reply because I knew that the very fact that he had mentioned it to me meant that he was more bothered by this seemingly throwaway comment that he wanted to admit. In all honesty, I can’t answer why that Mum said that, though I can make some intelligent assumptions behind her reasoning and am certain that she never expected her child to come into school and say it directly to my son. It just shows that we need to be careful about what we say to, and in front of, our children and encourage them to be kind in their words to others.

I reminded M that our intentions are good. We’re actively trying to raise some much-needed awareness about EGID and that the annual fundraising events that he’s held at school have been the result of us proactively asking to organise them. I’m not ashamed to speak out loud about a condition that impacts us every day and I don’t want M to feel that he needs to hide the reality of what he goes through. However, he also knows he can share as much or as little as he chooses about his daily life and that there will never be pressure from us to do more than he’s comfortable with doing.

We’re lucky. Having spoken out loud to me, and then later to Mike, about this comment, M has forgotten all about it and has happily got on with the rest of his week. His ability to bounce back after a ill-considered remark that obviously cut deep is admirable and truly reflects the resilient young man he is growing up to be. Today both children have proudly gone into school wearing an element of pink to raise awareness amongst their friends. M’s “Dress up as your hero or superhero” day for Over The Wall is currently under way and he was excited to see what his friends would be wearing – he has gone as his very own hero, Ryan (the doughnut man) from Borough22. Most of all, we’ve all done our bit this week to show this disease just how resilient we are and I’m proud to acknowledge that many in the global EGID community have done so too.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

NEAW 2017 – No man is an island

Sometimes, when you’re stuck in the midst of the relentless demands and emotional turmoil of a chronic illness, it’s difficult to see beyond your immediate reality and nearly impossible to believe that anyone else can even begin to understand how you’re feeling at that moment in time. It is no surprise that the one with the diagnosis often becomes self-centred and self-absorbed as their illness dictates every facet of their life and it can take a long time to really grasp that there are others out there who can empathise because of their own struggles and experiences. It’s all too easy for the focus of family, friends and the outside world to be focused fully on the individual and often the others affected by the diagnosis are left to struggle on their own by the wayside.

Over the years we have worked hard to try to give G the attention she deserves and it’s heartbreaking to realise that there are more times than I care to admit where we have absolutely failed to get that balance right. M’s ill-timed admissions over G’s birthday for 2 years in row were a bitter pill to swallow for us all and nothing could really make up for the disappointment of spending her 12th birthday too many miles apart. Encouraging G’s involvement with our local Young Carers group and the GOSH YPF as well as applying for her to be a part of the Over The Wall siblings camps have all been important steps in recognising the impact that M’s health challenges have had on her over the last 13 years and supporting her to find her own identity that is completely independent from him. It is an ongoing process for us and Mike and I will continue to strive everyday to support G as much as she needs, especially as the emotional roller-coaster of her teen years starts.

Just as our family is affected by M’s EGID diagnosis, so too is the community that surrounds him. I have mentioned so many times the amazing village school that both G and M have attended and everyday am grateful for their unfaltering support. Since M arrived at their gates nearly 4 years ago, they have willingly taken on the responsibility of dealing with a child with complex additional needs, not just medical but educational too. They have allowed both children, and us, to promote NEAW and their continued support with our fundraising efforts has been fantastic. I regularly read about the problems other parents with EGID children are facing in their schools around the UK and I know that we’re incredibly lucky to found this little gem. M has been able to attend school with a feeding tube, a broken leg and an extremely restricted diet and his attendance is remarkable for a child who has been through so much in so short a time. His Year 6 teacher has been fantastic at encouraging him this year when the prospect of SATS has caused him unbelievable anxiety and she has put up with a plethora of emails as I’ve tried to iron out the biggest wrinkles in a stress-filled few months. His classmates have similarly been an irrefutable source of encouragement and his move up to secondary school in September will be eased by their presence in his life.

We do not live in splendid isolation and every action we take has a ripple effect that can stretch out further than we can ever imagine, especially as a child. We are extremely lucky to have a community that works with us to help both children have the childhood that they are entitled to enjoy, one that is all too often marred by the difficult reality of chronic illness. As G and M grow older, my hope is that the realisation slowly dawns that whilst everyone’s life is unique, there are moments that teach us all lessons that can help us reach out to and empathise with others. Going to Over The Wall camps has shown both children that, despite those times when they feel isolated, there are others in the bigger world that do understand what they’re feeling, what they’re living and who can perhaps help them learn to survive even the darkest of emotions; and that when they have survived their own dark place, they can reach out to others who need to be brought back into the sun.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

NEAW 2017 – Wings to fly

As a parent, one of the biggest challenges you face is helping your child grow in self-confidence, develop independence and to ultimately give them the wings they need to fly away from the security of the family home. There are so many obstacles to overcome along the way and when a chronic illness is thrown into the mix, it can feel almost impossible to let your child take those first steps on their own. Our determination to not let EGID define either child means that every day is an opportunity to let go of our own anxieties and concerns, and encourage them to make their own decisions regardless of the limitations that health, medicine and diet place on them. Of course, much as we work to equip G and M with the skills they’ll need as they grow up, I know that they need to learn so much more than what Mike and I can teach them on our own and so we always look for any opportunity to develop their learning from experiences that are beyond our ability to give.

That’s why once again this year, I completed the application forms for both G and M to attend the fantastic camps offered by charity, Over The Wall, knowing that their respective weeks away from home will be all about friendship and understanding and being amongst equals and building self-esteem and so, so much more. When G came home from the South Siblings Camp last year, she was a different child to the one who had left us just 5 days before. The time spent with others who have a similar home life to her was invaluable as she realised that her life experiences didn’t isolate her in those circumstances; and the focus on her and making sure that she had the best time she could helped G to find a self-worth that she had been struggling to develop at home and at school. Likewise, M had what could only be described as the best week ever as he was able to spend a week away from home without family for the first time in his life. He tried his hand at activities that had terrified him before and he too found great comfort in the realisation that he is not on his own in his health challenges.

We were all delighted when G heard she had a place at this year’s Siblings Camp and we couldn’t wait to hear all about her adventures there as a Green Girl. From the moment I dropped her off with some familiar faces, including the unexpected, but much welcome presence of G’s buddy from the GOSH YPF who was volunteering for the very first time, I knew that she was destined for another great week. Their unfailing attention to detail and care for the young people they were responsible for during the camp was impressive. We received a phone-call on the second night to say that whilst G was having an amazing time, she was struggling with the “fancy” gluten- and dairy-free food that the chefs were lovingly preparing for her and wasn’t really eating as much as they would like.  A quick catch-up to understand G’s food preferences and the reassurance that they would continue to keep an eye on her was all I needed to be certain that their care was absolutely everything I could want it to be.

M, Mike and I were all able to make the journey to pick G up at the end of her week away and were all immersed in the joy that is the camp bubble of OTW for the short time that we were there. Our Green Girl had tried her hand at most things, exceeded her own limitations and came away with a much-deserved pride in her achievements. This photo of a beaming G at the top of the climbing wall reflects her determination to overcome her self-proclaimed fear of heights and the pride she felt when she surpassed what she managed last year to achieve: more than she had ever believed herself capable of doing. Unlike the previous year, when she had been reluctant to take part in the Talent show, this time round, she went prepared with a routine she’s been working on during her school dance club and performed with a confidence and grace that reaped an impressive number of compliments as well as moving her YPF buddy to tears with her passion for her dance. G became good friends with several in her team and has been keeping in contact with them in the weeks following camp. She has developed a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer.

It is thanks to Over The Wall that my children are becoming all that they can be and are learning that chronic illness doesn’t have to be a hurdle to anything they want to do. Over The Wall truly gives both our children wings to fly and our thanks just don’t seem to be enough.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.