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Alexander's Future Fund

  • Alexander helps Australians raise awareness

      4 August 2015
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    The pictures you see of Alexander with a purple boarder are part of a larger awareness raising programme in Australia. Outside of the US, Australia is second in support & fundraising for EGIDs. The rest of the world including NZ has no such group or profile. It is something I have long worked on but find we are better collaborating due to such low numbers. No money changes hands but information, & support. I am the NZ contact & have spoken with Rare Diseases Org here. We have been in touch with Ausee almost since it started & together we cover a number of jobs - research, reading, awareness, tips & tricks. There are varying levels of EGIDs, Alexander being 10yrs in & severe keeps us all in contact. He loves being able to help them by providing a peak into living with this condition. I think we all believe & hope we will get further together. The wonderful title he was bestowed recently is printed on his t-shirt & has traveled the EoE world.

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  • Chef Alexander's attitude goes international

      6 March 2015

    Alexander had a positive story published before Christmas on Campbell Live. His love of food, in spite of being majority tube feed amino acid formula & keeping as upbeat as he can. How much I would have loved to really talked about the struggle with rare conditions & keeping him going, well us all going really, but we kept true to the idea that he is such a cool little chap with a fabulous attitude & amazing coping mechanism, a really proud moment just for him. I thought this would be great to remind him of when things are tough, 'see you can do it, look'. We sent this link to Australian & US EoE support groups. It meant other children could see someone else similar to them but from a positive point of view. Alexander had seen this himself on a YouTube clip with a boy called Daniel in the US who was older but also played piano & liked football just like him. It means a lot to identify with someone else. We got lovely feedback from others because it is a lonely road they face too. To top this off the Centre for Eosinophilic Disorders in Cincinnati Children's liked his clip! Now if only Jamie Oliver (his foodie guru) saw it.

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  • Stuck between a rock & a hard place. Trying to keep him well.

      6 March 2015

    Late December we had our teleconference with Starship to review Alexander’s progress. No real surprises but we were disappointed to hear that to hope for any on-going remission was unlikely as environmental triggers are now a feature. The plan was to keep going, trying new foods, keeping an eye on symptoms & medically intervening when necessary. As parents we came from the "try to keep well & try to track what works & what doesn't". Stuck between a rock & a hard place comes to mind. The main centre in the US are more conservative in their approach & do more tests & take more time. Triggers for EoE can be are particularly difficult to identify. We need to keep the eosinophil count down to keep pain, vomiting & oesophageal scarring at a minimum. Obviously it is exciting to add food but if we add too many at once it gets harder to track down any one reaction. We take 2 weeks per food. Onion, garlic, lettuce are now on the cards. Onion might seem a strange start but Alexander insisted as he knew the flavour would be worth it, still the 'foodie'. These foods are low on reaction tables so fingers crossed.

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  • Christmas time

      6 March 2015

    Well it’s been a while. Christmas time came & went quietly with lots of family down time. It was so good to have Paul on holiday at home. Alexander started to bike more but had long outgrown the old BMX so we thought it was a good time to search for a new bike to encourage more confidence & exercise. Since we had always bought second hand it was quite an experience looking at new bikes. We hoped to get a lighter frame. Bike Barn had the best fit & we thought using some of his funds for this would be appropriate. Jeremy heard the discussion re: fund & said we could have the sale price. This was 50%! We had missed the sale by 2 days but he honoured the price signing his name as ref. Thank you Jeremy. The bike has been a great hit & Alexander is loving the challenge.

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  • Seasons Greetings

      14 December 2014

    So many wonderful messages & encouragement. It is truly humbling & lovely. Alexander is busy designing his carrot, broccoli & apple Christmas meal which we stick into a foam shaped tree covered in tin foil. He is also planning ours! We hope to Skype with Starship next week for possible next step. We are all so looking forward for some time together over Christmas, we hope you find some good company, rest & fun also, Seasons Greetings to all.

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  • update from Cincinnati Children's Hosp re EoE research

      14 December 2014
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    From the world center for research & treatment of EoE - Note Alexander doesn't respond to current drug suppressant treatment so we hold out hope for their gene pathway research. We try to keep in touch with them & support others with EGIDs here in NZ.

    "All of the members of the Cincinnati Center for Eosinophilic Disorders sincerely appreciate your partnership with us in our dedicated pursuit of improved knowledge and treatments. Please listen to the video message linked below, in which our Director Marc Rothenberg share's his thoughts on the current state of knowledge and a little tour."

    https://www.youtube.com/watch?v=LtR2uwwuIMY

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  • Newspaper article generates generosity & support

      27 November 2014

    Goodness - so much support from so many people. It was quite a surprise to see the article so well written by Sam Sherwood at Central Canterbury News then picked up by The Press & Stuff. We were barely awake when the first text came in. Trying to get children to school in the morning I never look at the computer, so it was a funny ol' morning. Coming back after his afternoon tube feed there was a flood of good wishes. There was also Dorothy in Kaipoi who has offered a jungle gym, Jenna a hairdresser in Woolston offering her services, all strangers until now. We are not sure how to express our gratitude at your generosity - Thank You.

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  • He can't eat but he can cook..

      25 November 2014

    Alexander, 10 years old who is tube fed & cannot eat (used to) due a rare chronic immune condition Eosinophilic Oesophagitis but loves to think about, smell & cook food. A Jamie Oliver fan & all round cool dude.

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  • Thanks Foosball WM

      11 November 2014

    Not actually a mystery. Organised by Andrew Sharpe, thank you. We had a great time just being in the moment dodging some fast & fancy moves by local families. A few tears at feed time (does feed at school in playground sometimes 'al fresco', but I think threw him a bit & got all het up feeding in public). Good practice though & in a very supportive environment. You are all helping in many ways.

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  • Thank You West Melton

      8 November 2014

    When the 150th committee (especially Andrew & Nicky) said they would incorporate the Beardy Competition with fundraising for Alexander we were quite blown away. They were so busy with the Field Day & then the 150th weekend I don't know how they had time to add more. The 2 events the Committee ran were fabulous, as you know, the weather couldn't have been better & all had a great time. The People's Choice was a great idea & fun. We are extremely grateful for their effort on Alexander's behalf, it was a really thoughtful & generous act.

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  • thank you

      28 October 2014

    Hi Karen, Dave, the Greenwoods & Jill - thank you for being so thoughtful & supportive. It was a fabulous weekend of celebrations & goodwill in the WM community. With the genie out of the bottle so to speak I appreciate your kind words when feeling a little hesitant. You help prop us up.

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  • the difficulty with new & rare conditions

      21 October 2014

    We also hope to skype Starship immunology from Chch hosp before Christmas. Regardless of the next set of results we need to be talking about how do we hope to identify possible safe foods to try, as we have backtracked almost to nothing already for a third time over 8 or so years. For Alexander who loves food it is a big ask to keep trying & then having to give up again. At mealtimes we sit down together as a family, still keeping it a social time, but sometimes this is too much & a waft of something 'yummy' will trigger tears. When off all food & only eating ice he still loves to watch Jamie Oliver, they're like 'tight' apparently. He is very passionate about flavour & presentation, even when he can't eat. Although we have found some international papers on protein grouping we are still failing. That's if it's only food, it can also be environmental. It's a frustrating & very time consuming process when dealing with a rare & new condition, ""we don't know"" is a common response. With no known outcome or cure. Treatment is 'borrowed' to suppress symptoms. No support group, no statistics, no funding, no plan. I'm working on it. The discomfort & pain he has lived with varies & becomes the norm. Avoiding button infections a daily duty. The day in day out of feeds, pump alarms at night & heartbreak of missed social activities can become too much. Who does/can he talk to besides us? He is so good humoured, please may that last. We still haven't promoted this page, maybe I should have blogged/diarised instead, it's quite cathartic to chat. It's that extra step...

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  • out of the mouths of babes

      21 October 2014

    ""Why did God make me this way?"", ""I'm afraid to tell you that I don't trust you"", especially after a particularly traumatic hospital visit; most parents who have had to hold down a screaming child for a medical procedure or two, three know what I mean. This from the same child who gets jokes ready for the doctors & nurses for each theatre visit. They look forward to it, he has gained quite a reputation. They want to make it part of other children's operations, they take copies of his jokes to pass on. According to Alexander going to sleep is okay, it's the waking up he doesn't like. His favourite toys takes turns so as not to be left out. We take the bucket!

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  • Alexander finds out about his most recent results

      20 October 2014

    Alexander found out his results during the holidays. He was very upset that evening. Incredibly he asked permission to go nuts with this information - after ripping up the page the results were printed on he then stamped on them & ceremonially threw them on the fire that night. All quite reasonable we thought. The next day he was back on track, unbelievable. More food was taken away, now less than a handful of foods to nibble on, just a taste really. He will rely on the 3 gravity tube feeds a day & 10hr overnight pump feed. 1ml=1calorie. I don't know how he sleeps through the noise of the pump whirring away - whirrr, clunk, whirrr, clunk. Next biopsy operation scheduled already for November, his 15th or 16th op I think.

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  • rare disease research network USA funds centre for eosinophilic research

      20 October 2014

    News from Cincinnati Childrenfs Hospital Medical Center in the USA, the worldwide center for eosinophilic research & treatment; patients fly in from all over the globe for guidance & information. They have received a 5-year grant from the National Institutes of Health to lead a consortium of organizations from around the country that will conduct clinical research into eosinophilic disorders and train investigators in how to conduct clinical research. Eosinophilic disorders are chronic inflammatory disorders. When inflammation is in the esophagus, the condition is known as eosinophilic esophagitis. gThese are painful, lifelong diseases that make it difficult or impossible for individuals to eat many or all foods,h says Marc Rothenberg, MD, PhD, director of the Cincinnati Center for Eosinophilic Disorders at Cincinnati Childrenfs and principal investigator on the grant. gIndividuals with these diseases often have to fuel their bodies by drinking costly formulas. We will collaborate with researchers, patients and patient advocacy groups to better understand, treat and educate about these diseases.h ""Collaborative research is critical for progress in understanding and treating these rare diseases,h says Dr. Futura. gLittle could be accomplished without the support of patients and patient advocacy groups, our professional networks, and clinicians and researchers from around the globe. These conditions are a global health concern, and it will take everyone working together to address them. We are so fortunate to be able to formalize these collaborations through this new consortium and the stellar infrastructure and processes of the Rare Disease Research Network.h

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  • Thank you Fuji Xerox

      7 October 2014

    I can't thank you & Fuji Xerox enough , I was so blown away by your note that I actually cried on the spot. You make us feel visible & heard, I can't tell you how lonely it is when dealing with a rare disorder & to have such a thoughtful letter to support an incredibly generous donation is a wonderful surprise. I am working on setting up a rare disorder link (through NZORD) for others & I am already a contact for some NZs with EoE, I am also looking to put support page in place linked to the Australians. I have joined some committees voluntarily to further support/policy to the wider public. Straight away the first thing we will do with your donation is purchase 2 new epipens (co-morbid immediate allergies), his iron supplement $69 as his storage levels have halved & tablets not subsidised. Also maybe cover some summer sport activity (to encourage physical activity, courage to use gross motor movement & help social contact/acceptance). I would love to offer him some educational tutoring as he falls behind being away from school but not sequentially enough to gain health school support. Also his MicKey button needs protection when playing sport, nothing readily available here, but I have found a great one from the US. As you noticed I haven't actually promoted this page yet, friends suggested it but I still feel a bit odd. Not sure how you found us but thank you...please pass our gratitude onto the company.

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  • Update for 11/09/2014

      11 September 2014

    Results came through from last weeks biopsy, they were not as we hoped. In fact his eosinophil count in the mid oesophagus was his highest ever. No remission. Not sure what's next, it's a bit overwhelming at the moment as we were so hopeful.

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