The diary of gluten and dairy allergic G (hereafter known as GalaxyGazer) and Eosinophilic Colitis sufferer M (hereafter known as Marvin)....

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GalaxyGazer and Marvin (after the paranoid android from Hitchhikers Guide) are perhaps better known as G and M, the 14 year old daughter and 11 year old son of Rachel from 7yearstodiagnosis. G has been gluten and dairy-free for as long as she can remember, whereas M, after eating normally for the first 5 years of his life, is now on an extremely restricted diet of fewer than 10 safe foods. Both children have strong opinions about life with M’s EC and all their food allergies and leapt at the chance to share their thoughts on a regular basis.

(For more on EC see Rachel's article here.)


15th December 2017

BBQIt’s been a busy few months since we last heard from our dynamic duo with Marvin taking his SATs – which he passed with flying colours – before finishing at his Junior school and moving up to the same Secondary school as big sister GalaxyGazer in September. GalaxyGazer braved the chop and supported 2 fantastic charities by doing so. With Christmas just around the corner, they look back at some of the highlights of the last few months.


BBQMarvin: I know the perfect opening scene for this diary entry. Dim the lights…cue Star Wars opening music...“A long time ago, in a Galaxy far, far away…”
GalaxyGazer: Marvin, it really wasn’t that long ago and it certainly wasn’t far, far away even though I know it’s been a while since we last wrote in our diary. We’ve got so much to share that I almost don’t know where to start.
Marvin: I think we should start with me passing my SATs and finishing at the Junior school. One of the best bits was the Year 6 production of “The Wizard of Oz”, where I had the part of the Coroner Munchkin and Mum sprayed my hair lots of different colours.
BBQGalaxyGazer: You did look kinda cool and it reminds me of having my hair cut short for charity. I donated my hair to the Little Princess Trust as well as raising money for Over The Wall. Lots of people sponsored my haircut and I ended up raising over £500, which was amazing and more than I thought I’d get.
Marvin: You did really well and I really, really like your new hairstyle.
GalaxyGazer: Thanks. Can you remember what else we did over the summer?
Marvin: We did LOADS of things, but the best bit has to be our holiday to Greece.
GalaxyGazer: Yeah, that was so cool and we got to see loads of cool things when we were in Athens. I really wanted to see the Temple of Hephaestus, which we managed to find on the very last day of our holiday before we flew home.

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Marvin: I don’t know which was my favourite bit, but we did get to see both things I chose – the Temple of Olympian Zeus and the Panathenaic Stadium. The museum there was amazing and we spotted that the Olympic Games have been held in London 3 times: 1908, 1948 and 2012.
GalaxyGazer: We also took the ferry to the island of Syros and stayed in a brilliant eco villa called the Good Life. We could walk to the beach every day and ate some really delicious food. I discovered I really like Feta cheese and Mum is now buying me some for my sandwiches at school.
Marvin: Oh yes, and Dad found that delicious smoked chicken fillet that was safe for me. Do you remember we went to the deli selling it and bought all the packs they had?!
GalaxyGazer: Mum even said we might go back again and liked the idea of booking to go one Christmas. I really hope she remembers that and that we do go back to Syros sometime soon.

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Marvin: Once we got home, it was pretty much time to start school, which was a bit scary as I’ve moved up to secondary school with GalaxyGazer. The best bit is that I get to walk to and from school every day with GalaxyGazer and sometimes she helps me carry my things, especially when I have my cello lesson, PE lesson and Cooking lesson all on the same day!
GalaxyGazer: It’s okay having Marvin in the same school as me again and he doesn’t bother me too much, though sometimes he likes to look out for me between lessons and comes to give me a hug. Dude – that is just so not cool in front of my friends.
Marvin: We’ve done some other cool things since September, but I think we ought to save that until our next diary entry!

For Mum, Rachel's report on eating out with allergies in Greece, see her 7 Years to Diagnosis blog here.


9th July 2017

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It’s hard to believe that the end of the school year is just a couple of weeks away now, which means that come September, Marvin will be moving up to our local secondary school and starting a whole new set of adventures alongside his big sister.

(This is Marvin on the Dress as Your Hero Day which he organised at school for NEAW week – dressed as his hero, Ryan from Borough 22 who made him those wonderful doughnuts that he could eat!! See below.)

The last few months have been busy and unfortunately, we’ve had to deal with some unexpected health challenges for Marvin that have sprung up at the most inconvenient of times. He just about survived the pressures of SATS and we are now eagerly waiting to hear how he did, though we all know that it really doesn’t matter what his results are and we’re just proud that he managed the week without too many meltdowns.

Once SATS were out of the way, our focus immediately turned to this year’s National Eosinophil Awareness Week (NEAW) and whilst we decided to make it a much smaller event than in previous years, GalaxyGazer and Marvin had some great opportunities to share their experiences of life with EGID and food allergies.

GalaxyGazer: Mum, Dad and I decided that we would eat like Marvin again this year for NEAW and although I found it really hard, even harder than it was last year and wanted to give up, I managed to keep to his diet for the whole week.

Marvin: Since February I’ve been trialling lots of new foods, but because I haven’t been very well, by the time it got to NEAW, I was only eating my 6 safe foods again – rice, chicken, cucumber, apple, pear and parsnips – so that’s all they could eat too.

GalaxyGazer: I did get one evening off when I went to my Young Carers session mid-week and Mum said it was too difficult to ask them to provide a Marvin-friendly meal for me instead of my usual gluten and dairy-free one. I was really glad and really enjoyed my dinner that night!

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Marvin: The best bit of the week for me was that Mum organised for her, GalaxyGazer and me to be on our local BBC radio station talking about EGID and living with my restricted diet. It was so cool to be in the radio studio and see how a radio programme is produced.

GalaxyGazer: We were interviewed live and didn’t know in advance what questions the presenter was going to ask, which was really scary, but it was ok in the end and I think we did a good job.

Marvin: Mum had warned us in advance that we needed to not give one-word answers or just nod our heads and I asked my drama teacher how I could give longer answers if the question just needed a “yes” or a “no”.

GalaxyGazer: Marvin ended up answering most of the questions…

Marvin: (interrupting)…well, Mum answered more…

GalaxyGazer: …but I spoke a little too. I really enjoyed doing it, though the best bit was seeing everyone who works in the building. I’d really like to find out more about doing research for programmes as that looked interesting to do.

Marvin: I’m not sure I’d want to be on radio, though lots of people said they thought I did really well, but I would like to know more about how to become a cameraman for TV.

GalaxyGazer: And one of my friends was really envious that I got to be live on the radio as she wants to work for the BBC when she’s grown up.

Marvin: Mum decided that this year we wouldn’t do anything else for NEAW, but I still wanted to do something at school. So I wrote to my Head teacher to ask if I could organise a “Dress as your Hero” day to raise awareness as well as money for Over The Wall. (ED. Over the Wall is a charity providing free therapeutic recreation camps for children with life-limiting illnesses.) Everyone paid £1 to come in their own clothes to school that day and we raised £216.25, which was amazing as I thought we’d only make about £100.

15th April 2017

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We seem to have come full circle as GalaxyGazer and Marvin once again found themselves at the Awards ceremony for this year’s Free From Food Awards in London. Here they tell us a little more about the 2017 winners and the big night itself.

Marvin: This year’s Free From Food Awards ceremony was held at the same place we went to last year, though it was a lot easier for me as last year I was in a wheelchair with my broken leg.

GalaxyGazer: We missed the very beginning of the ceremony as we couldn’t leave home until after Marvin’s Grade 1 cello exam had finished, but the trip to London went really quickly and we listened to lots of cool music in the car.

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Marvin: The ceremony is held at the Royal College of Physicians near Regent’s Park and Dad managed to find a parking space right outside the door. It’s a really cool building though neither GalaxyGazer nor I like the portraits on the walls. They’ve got really creepy eyes.

GalaxyGazer:  It was really interesting to find out who had won the Gold awards this year. I knew lots of the brands already, but I really enjoyed learning about other foods that are available and safe for me to eat.

Marvin: The best award was the Superhero one, though I was disappointed that my personal superhero, Ryan from Borough 22, wasn’t nominated for it - both GalaxyGazer and I thought he should win!

GalaxyGazer: Once the ceremony was over, it was time to go and eat some of the free from buffet. This is my favourite part of the evening as it’s completely different from a normal meal out. I’m used to only having a choice of a few foods that are safe for me, but at the ceremony I’m able to eat most of the foods and I choose whichever ones I want to try.

Marvin: Even though I’m trialling some new foods at the moment, I still couldn’t eat any of the winning entries as they weren’t safe for me. Mum did allow me to have a taste of something I wouldn’t normally be able to eat and I really really enjoyed that mouthful (or two!).

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GalaxyGazer: The food was really yummy and it was nice to be able to have so much choice. My favourites were the Kelkin Teacakes and the Miiro Salted Caramel Choc Ices – and I enjoyed more than one of both of those!

Marvin:Whilst GalaxyGazer ate her food, I ran around and took lots of photos of the foods with my phone, which was lots of fun.

GalaxyGazer: I also enjoyed getting to know some of the people from lots of the companies that were there and finding out more about how they came up with their ideas. I was lucky because I got to talk to Lucinda Bruce-Gardyne from Genius bread. It’s my absolute favourite GF/DF bread and I love their bagels too.


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Marvin: We had a great night out, even if we were both exhausted for school the next day!

 

18th March 2017

There hasn’t been much time to stop and reflect since Christmas and February proved to be one of the busiest months of all. Despite their hectic schedules, GalaxyGazer and Marvin have managed to squeeze in the odd celebratory meal and wanted to tell us all about it.

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GalaxyGazer: February was a busy month for Marvin and me. We stayed with our Grandma because our Mum and Dad went to New York for a week.

Marvin: But before they went there, Mum and Dad also judged some of the categories at the Free From Food Awards 2017, which meant they were away for nearly 2 weeks. And GalaxyGazer and I were upset because we wanted to go judge the Awards as well.

GalaxyGazer: They went to New York because it was Mum’s birthday present from Dad…
(Dad interrupting: …except that didn’t really work as I still had to buy her jewellery as well!..Oh, back to you two….)

Marvin: At the end of the month, we all went out for lunch for Mum’s actual birthday. We went to the Café Nouveau near Frome and the owner, Susan, even made Mum a spiced apple cake for her birthday cake.

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GalaxyGazer:  We went there for lunch because last year we were lucky enough to be able to visit as judges for the Free From Eating Out Awards. We thought it was a brilliant café and it ended up as a Gold award winner. Everything there is both gluten- and dairy-free, which meant I could choose whatever I wanted from the menu as it was all safe for me.

Marvin: They can also cater for all of my allergies and this time Susan also made me a vanilla rice milk drink which was delicious. They even warmed it up for me so it was a little bit like a hot chocolate – yum!

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GalaxyGazer: Mum’s spiced apple cake was also gluten- and dairy-free and looked really good. I tried some, but it wasn’t my favourite flavour, although Mum and Dad both absolutely loved it.

Marvin: And they let Mum take the remaining pieces of her cake home, so we shared it with the rest of our family too.

GalaxyGazer: I would recommend this café to other people because it can cater for allergies really well and I have had the most amazing food there both times we’ve visited.
GalaxyGazer’s marks: 10/10
Marvin’s marks: 9/10

 

20th January 2017

Christmas.......

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Christmas is heralded to be “...the most wonderful time of the year…”, filled with the excitement of seeing what Father Christmas brings, the promise of time together as family and the expectation of more food in a couple of days than most of us would consume in an average week. Roast turkey is the central piece for lunch on the day itself and is then reinvented into curries, stir-frys, pies and cold cuts to be endured enjoyed for an unexpected number of days afterwards too. When you’re living with chronic illness and a huge amount of food allergies, getting into the Christmas spirit can be challenging and here GalaxyGazer and Marvin share a bit more about what the recent holiday season meant to them.

This year we spent our Christmas in South Wales with our Mum and Dad, Grandma, Great-Aunt and Great-Uncle. We had a really great time and wanted to tell you all about it.

What did you have for Christmas lunch?
GalaxyGazer: I had mostly the same as everyone else – roast turkey, roast potatoes, carrots, peas and sweetcorn. My Grandma bought some gluten-free sausages which she wrapped in bacon for me and also some gluten-free stuffing. The sausages were delicious, but I wasn’t so keen on the stuffing.
Marvin: Just before Christmas I trialled parsnips and they were a pass #J, so for my Christmas lunch, I was able to eat some roast parsnips as well as roast chicken, wild rice and an apple, pear and cucumber salad with a herb and oil dressing that my Mum made. At my last hospital appointment, we chatted with my doctor and he said that I could have a special treat on Christmas day and could choose 1 food that I don’t usually eat. I chose potato, which I have trialled unsuccessfully before and enjoyed a couple of specially roasted potatoes with my dinner too.

BBQAnd how about dessert?
GalaxyGazer: I had some goats’ cheese, celery and gluten-free crackers. My Great-Aunt also bought me some gluten-free mince pies to try. They were ok, but definitely not my favourite.
Marvin: My Mum made some M-friendly gingerbread (see here for Rachel's recipe) which I really enjoyed. She also managed to adapt a recipe and made me some safe vanilla ice-cream, but I didn’t have that on Christmas day itself.

Did you mind having to take your medicines?
Marvin: No, I’m really used to taking my medicines every day and I know that I can get poorly if I don’t have them. I took all my usual medicines, but I had to have some antibiotics as well because I had flu and tonsillitis during the last week of term. I’ve also had to start taking multi-vitamins every day, but I don’t like those so much.

What was your favourite present?
GalaxyGazer:  I have tickets to go and see Disney on Ice in April – and I can’t wait!
Marvin: My favourite present was my laptop, which my Grandma bought me as a joint Christmas and birthday present.
GalaxyGazer: We also had a candyfloss maker between us, which is really cool as it’s one of the few safe treats that Marvin can eat. Our Dad made us some candyfloss which didn’t take too long and was very tasty…
Marvin (interrupting): …and I can’t wait to have some more! Mum and Dad also bought us some safe treats from when they went on holiday to the Italian Alps earlier in the year. GalaxyGazer had a jar of local honey and I had some scrumptious apple compote. I just want to know when we’re going back there to buy some more!

BBQDo you have any New Year’s resolutions or hopes?
Marvin: I haven’t made any resolutions for New Year.
GalaxyGazer: I’ve decided to keep growing my hair and then, just before we go on our summer holidays, I’m planning to have it cut quite short and donate it to the charity, the Little Princess Trust. They use the donated hair to make real hair wigs for children who have lost their hair due to cancer or other chronic illnesses. I’m also going to fundraise for charity by asking family and friends to sponsor my haircut.

 

11th December 2016

Takeover Challenge at Great Ormond Street Hospital

BBQTakeover Challenge is a fantastic project run in November by the Children’s Commissioner and sees organisations and businesses across the UK opening their doors and inviting children and young people to take over adult roles. It gives children the opportunity to gain insight into the working world, whilst the organisations get a fresh perspective about their work. Last week, GalaxyGazer and Marvin were invited to be a part of this year’s Challenge at Great Ormond Street Hospital and were keen to share their experience.

What did you do last month?
GalaxyGazer: I took over a job in Great Ormond Street Hospital for the day.
Marvin: (interrupting excitedly)A super cool job!

What job did you take over?
GalaxyGazer: We were invited to take over roles in the Property and Development Services department. I was the Deputy Director…
Marvin: and I was the Director of the whole department.

What did you do during the day?
Marvin: I visited the plant room where the energy is generated, learnt about the patient bed entertainment and the education systems, had a go at using CAD (Computer Aided Design), met GalaxyGazer for lunch, went on a phase 3 building site visit of a new centre and had a debrief. Done!
BBQ GalaxyGazer: My morning was different as I did some healthcare planning of a new therapy area for the orthopaedic department and visited the kitchens before meeting Marvin for lunch and spending the afternoon with him.
Marvin: Oh and I got the chance to go onto the roof of the hospital to learn even more about how it’s run and their energy use. That was so cool.

What was the most interesting thing you did during your day?
Marvin: I really enjoyed doing the CAD work and learning how they use it in this department. CAD is rad!
GalaxyGazer: The Healthcare planning – it was challenging to fit all the requirements into the space available, but it was so much fun.

What did you learn?
GalaxyGazer: I learnt about how to design rooms with certain areas blocked and how to overcome the challenges to make sure the final room has everything in it that it needs. I also learned lots about how the kitchens work and run and what the Diet kitchen is like. That was really interesting because they’ve had to cook food for M when he’s been in hospital and cooked lunch for us both on the day. We also got to see how a construction site is run and the problems they face when they’re building new buildings. I had a very good time doing it all.
Marvin: I was really keen to learn more about the hospital’s energy use and see the plant and machinery that keeps it running every day. The plant spaces are simply amazing, they’re absolutely huge and the work they do on sustainability is really impressive.

Would you like to do the Takeover Challenge again?
Both: Absolutely!
Marvin: Sign me up now for next year.

Fiona Jones, the children and young people’s participation officer at GOSH said: “Takeover day is a great opportunity for children and young people to learn about and meet the people that run the hospital services they access. GOSH works hard to ensure that we are listening to and involving children and young people in the way that the hospital treats our families. Takeover day is the perfect opportunity to put that into practice and let all levels of staff hear first-hand from our patients.”

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15th September 2016

Back to school

BBQGalaxyGazer:

Going back to school can be scary. Some people love the thought of school, others hate the thought. I looked forward this year to going back because I am in Year 8 and was excited to be doing Dance and Drama although, annoyingly, the Year 7s do it as well, whereas we didn’t.

In my school, when we go into Year 8 some of us learn two languages and there are three advanced sets who do: Spanish and French, Spanish and German or French and German. I am in the set that is learning Spanish and French and am really enjoying it so far. Another difference is that in Year 7, every other week we had Breakout, which was where we had no proper lessons, but did a variety of educational and fun activities such as Art in the City and a tour of a local museum. Unfortunately, in Year 8 there is no breakout, which I am sad about.

I haven’t had to think too much about going back to school with my food allergies because this is my second year at the secondary school and most people already know about them. Most of my friends eat packed lunches, which is a good thing because I take safe food from home for my lunches and I can sit and eat with my friends. I’m not keen to try the school lunches because I’ve almost always had packed lunches to avoid any cross-contamination issues.

Marvin:

Not much has changed since last year.

BBQIn my classroom, I have a swap box that is kept away from the rest of the children in my class and is in my teacher’s cupboard. Nobody is allowed into the cupboard or to touch my swap box. My swap box contains trading cards and Lego mini-figures to swap out with any sweets that are brought in to celebrate people’s birthdays. I can’t really remember when I first had my swap box, but it used to include safe sweets before I went elemental and was put on a very restricted diet. However, this year one of my friends, Moonstruck, also brought in some Foxes Glacier Mints on his birthday for me because they are my only safe sweets.

This year I’m in Year 6, which is the last year of Junior school and I have the privilege to eat my lunches outside if I want, no matter what the weather is like. I have to take a packed lunch every day because my diet is so limited and it would be difficult to cater for me. Just like GalaxyGazer, most of my friends also have packed lunches, so I always am able to sit with them during lunch.

Another of my friends, Flyer, has Type 1 diabetes and he and I have to go up to the school office before lunch every day so that I can take my medicines and he can test his blood glucose levels and have his insulin.

My school knows me so well that I wasn’t worried about going back to school this September. They have looked after when I had my feeding tube and then again when I broke my leg, so I know all the staff very well and they know me. I feel much more scared about the move up to secondary school next year, even though I will go with lots of my friends because it’s a new school to me and I don’t know how they will cater for all of my allergy needs or what I will need to do with my medicine. However, that’s a year away and I’m going to enjoy this year as much as I can.

 

13th August 2016

Going on holiday....

BBQGalaxyGazer:
Today I want to share with you all about our holiday to Portugal, where we are soon going for 10 days. Marvin and I need to pick out our books, toys, games, suncream, sunglasses, caps, clothes, shoes and whatever else we might want ready for Mum to pack. On the other hand, Mum, and Dad, although mostly Mum needs to pack food for Marvin, snacks for me and all the other dietary and medical requirements we might need…

Marvin:(interrupting excitedly)I can’t wait to go!

GalaxyGazer: (patiently) Yes Marvin, we know you’re excited!
Anyway, because Marvin has such a limited diet, we need to make sure we have enough supplies of his safe foods with us in Portugal and my allergies mean I need safe snacks for during the day and just in case my meals aren’t big enough. Mum has spoken to our doctor to arrange a special letter which explains why we need to take these things with us and has contacted and the airline about having an extra suitcase.

Inside the suitcase Mum will pack some packets of rice crackers, apple wiggles, apple crisps, microwaveable rice pouches, cereals and rice milk that are safe for Marvin to eat and which we don’t know if we can buy whilst we’re there as well as all of the medicines Marvin will need. I’m hoping she’ll also pack a few gluten-free and dairy-free snacks for me and I think she normally takes some of my bread with her too.

Mum says that because we need this food for medical reasons, the airline lets us take the extra suitcase on the plane for free. She’s done this when we’ve been to Portugal before and also when we went to Florida a couple of years ago. Mum said it’s always worth checking with your airline if they can accommodate this request and that in her experience, most of them do.

Marvin:(in a state of excitement)
Mum has also bought some special cards that explain what I can eat and ask about catering safely for me so that when we go out for a meal, I will be looked after. On one side it says it in English, but on the other side the words have been translated into Portuguese. Wicked!

GalaxyGazer:
Mum explained that usually these cards say what your allergies are and you can buy them from
Allergy UK. However, we needed some that specifically stated Marvin’s safe foods…

Marvin: (interrupting again)
…because that list is a lot shorter…

GalaxyGazer:
…so she spoke to a lady at a company called Yellow Cross, who worked with Mum to translate the exact words she wanted on to the cards correctly.

Thank goodness Mum has got that all sorted and Marvin and I just have to worry about enjoying our holiday abroad!

 

3rd July 2016

BBQThe 3rd week of May seems like a lifetime away now, what with school holidays fast approaching, but it was an important week in GalaxyGazer and Marvin’s household. May 15-21 was National Eosinophil Awareness Week and both our diarists took the opportunity to spread the word about EGIDs (Eosinophilic Gastro-Intestinal Disorders) and how this group of rare diseases affect their world. Here they share a little more about what they did to raise awareness in their local community.

Marvin:
For National Eosinophil Awareness Week, I wrote a story about a boy called Joe, who had EGID and how his diagnosis affected him. GalazyGazer helped me by illustrating the story and with some help from our Mum, we made a time-lapse short film of it. On the Friday during assembly, I showed it to my school to help them understand more about my illness and how it can make me feel.

GalazyGazer:
And Mum also added the film to YouTube and then shared it on her blog and via social media, so more people could see it.

BBQMarvin:
Then some of my friends and I ran some break-time games on that Friday, which were based on things to do with EGID. We had a “Guess the name of the toy dog” competition, he was called “Phil” after eosino-phils; “Guess how many safe sweets in the feeding bottle”, these were Foxes Glacier Mints as they are the only safe sweets I can eat; and a treasure map, where my school mates had to identify where in the body eosinophils might be found if you have an EGID. The games were so popular that we had to run the games during our lunchtime as well and we raised £81 for “Over The Wall”, which was the charity GalaxyGazer and I chose to support this year.

GalaxyGazer:
I helped raise awareness by running a non-school uniform day for the Year 7s at my secondary school. A letter was sent home from school explaining what EGID was and why we were raising awareness of it as well as talking about Over The Wall. Each tutor group showed the short film that Marvin and I had made and then collected a £1 from every student, which has been donated to Over The Wall. This week, Mr B our Head-teacher, presented the cheque to me, which came to an amazing £280.

Marvin:
Our Mum organised for us to have stalls at 2 community fairs in May, where we ran some games and GalaxyGazer gave out some leaflets about the EGID support group, FABED (Families Affected By Eosinophilic Disorders) and about Over The Wall.

GalaxyGazer:
BBQThe hardest thing that Mum, Dad and I did was to eat like Marvin for the week, which meant we could only eat his 5 safe foods – chicken, rice, cucumber, apple and pear. Daddy even drank his formula every day, so we knew a little more what it was like for Marvin and to show him some support. It was ok to eat like him for the week and the rice pasta dishes were actually much nicer than mine, but the packed lunches got really boring as there was very little variety each day. I am glad that I did it because it helped me understand what Marvin has to go through every day and I can support him even more, but I’m more glad that my diet isn’t so restricted and I could go back to more variety once the week was over.

Marvin:
So far we’ve raised £530 for Over The Wall and we still have one more fundraising thing to happen in August, so I can’t wait to see how much we raise in total.

GalaxyGazer:
And Marvin and I were in our local newspaper and Mum was interviewed on our local radio, so lots more people know more about EGID too.

BBQ

 

 

26th May 2016

GalaxyGazer and Marvin go to the FreeFrom Food Awards party – and GG eats five chocolate pots!!!!

At the end of April, Galaxygazer and Marvin went to the Free From Food Awards 2016 presentation with their Mum and Dad and they wanted to tell you all about it.

BBQOur journey to the FFFA16 started at the end of the school day. Mum and Dad met us at the car, which had been packed with our outfits for the evening as well as some snacks to keep us happy as we travelled. Mum had also packed a tea for Marvin so he wouldn’t go hungry during the ceremony. During our trip we spent the time singing songs, listening to CDs and cloud-gazing, which helped pass the time. We got stuck in lots of traffic on our way because there had been an accident on the motorway, which made us anxious about whether we would arrive at our destination on time. Luckily we did.

At the awards we met lots of people, including Ryan the Doughnut man (Borough 22), who makes the most scrumptious free from doughnuts which are safe for both of us. Marvin had broken his leg a couple of weeks before the FFFA16, so Ryan signed his cast – the first person to do that! The ceremony took a long time because there were so many awards to present to the winners of the different categories and the best bit was when they announced the overall winners. The overall winner was Nutribix, which was from the Breakfast category that Mum had helped judge and she was thrilled that they had won. Galaxygazer is still waiting to try Nutribix, but hopefully Mum will manage to get some soon.

Once the awards were over, it was time for food. We had already had some canapés to nibble on during the ceremony, which Galaxygazer thought were delicious. She particularly enjoyed the water buffalo on toast, but was really keen to get started on the main buffet. It was fantastic that the canapés and the buffet were full of free from options which were safe for Galaxygazer to try, even with her gluten and dairy allergies. Everyone apart from Marvin was able to try a selection of the winning food items and Galaxygazer was ecstatic to be able to eat so many of them.

BBQShe said that the Simply 7 Lentil crisps and Tesco's Garlic Bread were the best of the savoury choices and ate 5 servings of the Coconut Collaborative Little Choc pots – we think that was the real success of the night! Marvin wished he could have sampled at least a few of the foods that were available, if not all, but maybe next year.

A big thank you to all the people who helped organise the FFFA16 and those producers who took part. We really enjoyed being part of them and hope to do it again next year.

 

30th April 2016

Galaxy Gazer goes to camp...

27th March 2016

Celebrating a wild 10th birthday!

Have you ever wondered how well a 10th birthday party can really go when the birthday boy can only eat a handful of foods and just wants to be like everybody else? This month Marvin explains exactly what he did and ate for his birthday party this year and how it compared to previous ones.


Marvin:
BBQ When I celebrated turning 9, I had had my feeding tube for 4 months and was slowly re-introducing foods back into my diet. I hadn’t been able to eat anything over Christmas, so last year’s party was really good apart from the fact that my cake was made from polystyrene and I could only eat rice and cucumber, which didn’t really give us much choice for party food for my friends.

In the end we didn’t have proper party food like sandwiches, crisps and biscuits which I was glad about because I didn’t want to be the only person not eating proper food. Instead we had a fruit and sweets buffet because I was allowed the occasional Foxes Glacier Mint or Glacier Fruit as well as rice and cucumber.

This year my party was very, very different and I even had a cake I could eat. My Mum and Dad got me a bearded dragon as a joint Christmas and birthday present and so I decided I wanted a reptile party.

A woman came to our house with lots of different reptiles including a ball python, a tarantula and 2 cockroaches and my friends, sister and I had the chance to hold them and find out more about them. Not everyone wanted to and not everyone did, although I touched and held everything I was allowed to and my Mum even let the tarantula crawl across her hands!

BBQI even had a proper birthday cake and, best of all, Mum made it from my safe foods (rice, pear, apple, sugar and coconut oil) so I could eat it too. She decorated it to look like a bearded dragon was sitting on top of a rock, surrounded by brown sugar sand and it was absolutely epic! My friends loved it, although Lunar said it looked nothing like a Komodo dragon, until he realised my Mum had made it and then he said it was amazing! Everyone laughed at that, especially when she pointed out it was a bearded dragon and not a Komodo one.

On top of that, Mum talked to the man who made the allergy-friendly doughnuts for the Free From Food Awards 2016 that she had brought home for my sister, GalaxyGazer, to try.

BBQHe adapted his recipe to be safe for all of my food allergies and baked a special batch just for me to eat. I was trialling gram flour at the time and so he used gram flour, rice flour, apple puree, sugar and some other ingredients that I don’t know in them. This was my reaction! They tasted like actual doughnuts, which I haven’t had for a long, long, long time.

As I told my Mum, they were almost better than birthdays and I give a big, big, big thumbs up to Ryan at Borough 22, the man who made them for me. They were a brilliant birthday treat because I could eat something that looked the same as the ones that my friends were eating and I didn’t feel like I was missing out.

One of my friends, CosmicBoy, has just started eating a gluten-free diet like GalaxyGazer and he tried one of her doughnuts, which he said was delicious – there wasn’t a crumb left on any of our plates. Even better, Mum has frozen the remaining doughnuts so that I can have a treat every now and then without having to order another 6 from Ryan – though I wouldn’t mind if she did!

BBQ

Marvin’s marks: at least 150/10!

 

27th February 2016

Inside the minds of a #FFFA16 judge’s children

Our Mum was recently one of the judges for the #FFFA16 and we had our own, very definite opinions about her doing it. Our thoughts about her going included:

Why can’t we go?

GalaxyGazer:     I would have liked to eat the 116 foods Mum got to eat and it could help us find more foods we can eat
Marvin:                  Even though I wouldn’t have been able to eat anything, I would have liked to have met the famous people there and frankly I could really use the time off school.

Why are you going without us?

GalaxyGazer: WHY???
Marvin: IT’S NOT FAIR!

Why can’t we come?

Marvin: I WANT to come!
GalaxyGazer: Why can’t we?

Who said you could go because we didn’t?

Marvin: I definitely DIDN’T say you could go,
GalaxyGazer: And I didn’t either.

Why did you have to go?

Marvin: Oo! Oo! Can I go next time?
GalaxyGazer: Ah! Can I go with him?

Can’t someone else go instead of you?

Marvin: But couldn’t someone else go? Preferably me?!
GalaxyGazer: Please….could I go too? Please

But who’s going to be looking after us if you’re in London?

Marvin: (sternly) And don’t tell me it’s Daddy - he’s no fun. Really he isn’t, but please don’t tell him that!
GalaxyGazer: No comment.

Mum was judge at 4 different food categories, but we really weren’t sure why she chose the ones she did:

Breakfast Products

Marvin: I can see these could be very useful except for 2 things: 1) I can’t eat them and 2) I don’t normally eat breakfast
GalaxyGazer: I wouldn’t have bothered with this one because I already have some breakfast foods I like. However, Mum mentioned one that was a lot like Weetabix and I was excited about it because I haven’t had food like that for a long time.

Confectionery

Marvin: I can’t eat these (sticking tongue out before pouting). Goodbye! PS: except Foxes Glacier Mints and Mint imperials
GalaxyGazer: What M said. Wait, actually I can because Mum said she found me some new chocolates I could eat and some wafer biscuits to have with my ice-cream.

Ready Meals

Marvin: Still can’t eat it. Not going anywhere (looking bored)
GalaxyGazer: Not changing the facts here people, but again Mum said there was some things that I might be able to try like scampi, which sounds yummy!

Teatime Treats

GalaxyGazer: Mum brought back 6 doughnuts for me to try and these were absolutely delicious. They were like little pockets of heaven in my mouth. When can I have some more?
Marvin: (not looking impressed) NOT moving on here. Ddddduuuuuuhhhh!!        

Mum has said that she might be able to go back to judge the food awards again next year. That sounds like an okay idea, but we’d much rather go instead. Don’t worry Mum, if you’re not well or too busy to go, we’ll take your place!


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