Showing posts with label Harrison Honey. Show all posts
Showing posts with label Harrison Honey. Show all posts

15 February 2013

Harrison Honey

Alison and Phil wrote:

This picture (right) was taken of our son Harrison Honey, 6 months before he got sick with CFS/ME.

He was just turning 11 years old and it was his last day at Junior School, Year 6.

This was taken at his leaving concert. The theme was :-

 ‘Reunion 2020 – what you had become’.

Harri has always wanted to become an Airline Pilot ever since we can remember.

A week after the above photo was taken, we flew out to Grenada in the West Indies, for a wonderful two week holiday.  My brother was getting married out there and what a wonderful day it was!  



Harri had such fun celebrating with his little sister, Lydia, (then aged 2)
and his younger brother Jayden, then (aged 8).








On the return flight home, he was fortunate to be able to visit the pilot who showed him around the cockpit.  

He was so excited. 






In the September of 2010, he started his new Secondary School and all was going well, he had settled in well.   Everything was normal.

Sadly in January 2011, six months after our wonderful holiday to Grenada, he became very sick. 


Little did we know then how it would change our lives as we knew it.
Three months later he was diagnosed with CFS (Chronic Fatigue Syndrome)/ME (Myalgic Encephalomyelitis) which is a serious neurological condition.

His symptoms can fluctuate daily, the symptoms can come and go, or they can ease or get worse. Symptoms he has suffered include, apart from the on-going obvious debilitating fatigue, problems with his brain and central nervous system, resulting in loss of memory, concentration, balance, coordination and fine motor skills.


Experiences difficulty with sequencing words and numbers, speaking, thinking and absorbing information.

Muscular weakness and can often be seen twitching or having muscle spasms.

Exhaustion up to 72 hours after effort. Even minimal exertion (cognitive or physical) can trigger exhaustion.

He has abnormalities in sleep rhythm (i.e. insomnia), appetite, temperature control, digestion, blood pressure, circulation, dizziness & nausea, bouts of racing pulse (tachycardia), particularly upon standing.

Development of sensitivities (e.g. to light, sound, touch), mood swings, panic, anxiety or depression which is a result from brain dysfunction and the distress of this misunderstood illness. 

He has spent about seven weeks, on two separate occasions, in hospital as an in-patient where he was receiving regular monitoring, play therapy, hospital school, and physio, to help him regain the strength to walk, as his legs were like jelly and he didn’t have the energy to be able to stand. He has also spent at least six months at hospital as an out-patient. He has endured various hospital tests, including many blood tests, MRI brains scans, EEG’s, ECG’s, blood pressure monitoring and Tilt Table testing.



He will be 14 years old this July and although his illness is not life-threatening, during these last two years his young life has been completely put on hold in every way and he has been pretty much housebound. The impact upon the family has been devastating, especially for his siblings, which then becomes another issue you have to face. Life is far from normal, but we do our utmost to try to make it as smooth as possible.  
Harri was always a bright child, extremely academic and very sporty – there are not many sports he has not tried. I think ‘Free Running’ is one of the few yet still to try and this is something he would love to try out one day.
He has sadly now missed out almost three school years and misses all his friends that he had made – and all the activities he used to do, just being an ordinary boy. He just wants his life back as he knew it. He can now barely walk 100 yards without feeling awful and has to rely on his wheelchair.  Even standing up proves difficult as he begins to feel dizzy & sick. We can't rewind time, and as precious as it is, it keeps passing him by.  He gets particularly upset around special events such as Birthdays and Christmas understandably as it sparks yet another reminder of time passing him by.
It is still such a misunderstood illness and continues to baffle the medical world.
So in an attempt to feel that he is at least doing something to fight his illness he decided to raise money for a charity called IiME and by doing this helps to raise awareness and ultimately find a cure.
He has been completely overwhelmed so far by everyone's generosity and this has helped give him a boost and lifted his spirits.

We would like to say thank you for your time in reading this – and extra special thanks to anyone spending an extra two minutes of your time by clicking on the Just Giving link below:-
Love Ali & Phil Honey
Many thanks and very best wishes to the Honey family and all Harri's sponsors from the Team at Let's do it for ME in support of Invest in ME.


 
 

27 December 2012

December Updates

Total Raised so far - £73k!

*  We do hope you able are able to enjoy the best of the festive season this year. 

*  Thanks to the help and hard work of so many wonderful supporters, we are now over 70% on the way to the £100k target!

 *  Who could resist our adorable little LDIFME Teds all dressed up for winter – limited stock of this exclusive design. Handmade tug toys for your canine friends are also available. Click here for details of Teds and Tugs - many thanks to Annabel Luery!

*  Jane Hurst's Photocards make great gifts all year round: "Hi, We have put together some more photo cards. All photos featured were taken by friends and family all of whom, like myself have ME. The cards are printed on quality card and make lovely gifts, Thank You Notes, birthday cards etc. They are sold in aid of Invest In ME and The 25% ME Group. Cost is £3.99 per pack of 5 or £1 each. Postage is 75p per pack. You can pay by cheque or Paypal, just PM me for more details. Thanks ever so much."
Pack 1
http://www.facebook.com/media/set/?set=a.156767279186.145229.639834186&type=3
Pack 2
http://www.facebook.com/#!/media/set/?set=a.156759794186.145225.639834186&type=3

*  If you have any friends or relatives who would kindly take a charity collection box to work or host a coffee and mince pie morning or New Year Party or have other ideas to support us by raising awareness and a few extra £1s during the festive season, that would be wonderful.

*  Invest in ME placed another advertisement in London Business Matters for December and January, in time for Christmas and New Year.  The ad highlights one of the research projects that we are helping to raise funds for. The ad first appeared in October and this time it is supplemented with an "editorial" piece about ME featuring Rosa's 21st Birthday Appeal.  Click here for details.

*  The Invest in ME elves have been snowed under, busily packaging the superb Christmas cards and 2013 calendar, produced by Let's do it for ME supporters, and posting them out across the globe. The cards include a message about Invest in ME and Let's do it for ME on the back and the A5 size is handy if you want to include an IiME or LDIFME leaflet as a bit of extra ME awareness-raising, and also guarantees that they will be noticed when on display. The calendar has a factual quote about ME at the foot of each page to keep awareness going throughout the year and so would make an ideal gift to be displayed at your health clinic or elsewhere on public view, and why not send a card to your health professionals and local MP too? Many thanks to all involved in the Christmas card photo competition and contributors to the calendar, with special thanks to Julia Cottam for all her hard work on organising and coordinating the cards and calendar project. Click here to order - repeat orders are coming in as people are so pleased with the quality.

*  To see the wide range of other cards, decorations, and gifts produced in aid of our worthy cause, please see the Christmas Shop on our sparkly new website created over several months by Let's do it for ME campaign co-founder, Jan Laverick. Links on the page include the gifted supporters who make up the ever-expanding team of crafters of all ages, led by Jon Watson. The more the merrier so please contact us or Jon if you would like to join in. Jon has also been running Make ME Crafts stalls at local events and the last before Christmas was on Saturday 15th December 2012 from 09:00 – 17:30 at Love Southsea Christmas Market, Palmerston Road in Portsmouth. Jon's ingenuity, hard work and unfailing enthusiasm is truly inspiring and we are really grateful to all who support his efforts, and those of the rest of the team.

*  The 1st of the month is the day on which we hope that as many supporters as possible will take us a few steps closer to our goal by donating just £1.  What a great way to herald in the New Year by inviting your friends and family to join this event on 1st January.  Every £1 counts so please share the link to the One Day - One Pound page widely as it is a monthly event and will continue throughout the coming year.

*  November saw the release of not one, but two, brilliant audio plays with all those involved in both projects having generously donated their time and talents so that every penny of the proceeds go to Invest in ME! Writers Jac Rayner and Barnaby Eaton-Jones are both members of the Let's do it for ME team and were the instigators of these projects in aid of Invest in ME. We are quite simply blown away by the extraordinary kindness and support they have received and we cannot thank them and their fabulous friends and supporters enough for their amazing dedication to the spirit of our campaign. You can find out “who's Who” and more besides about the Big Finish audio download “Bernice Summerfield: Many Happy Returns” on our website here, and about Barnaby's audio play “Running To Stand Still” here. Jac also ran a competition for extra ME awareness-raising, which closed on 5th Dec. Details on her blog here.

*  1st November marked two years since the lifetime ban on blood donation by anyone who has had ME and the brilliant ME Awareness track “I Can't Stand Tha Rain” by Mama Chill and featured on our website here, raised £50 for a Halloween event, many thanks to Mama Chill, aka Stacy Hart!
 

*  Young Harrrison Honey got November off to a great start by creating his Just Giving page. He wrote, “Although it has been a year since I was in hospital due to M.E. I am still struggling with this awful misunderstood illness. I am still not in school and I want my life back as I knew it. I know many other children who are suffering with this illness too and I am in touch with them. They are also missing out on so many things like me. This is such a great cause, raising money to find a cure!!” We loved his update, “OMG, Speechless. After only the 2nd day of advertising my page I have already reached my target !!!! I have increased this now to £300 (double what I had originally hoped for). Thank you to everyone who has donated already. Harri =) Do take a look at his page here to see his latest update and the amazing amount he has been raising. Well done to Harri and many thanks to all his supporters and more news to come!

*  Young Maddi Kent and her wonderful family previously featured in a Make ME Crafts blog and have now raised over £1,000 including Gift Aid, through “Maddison's Bracelets”. We were deeply saddened and shocked to hear that the family has been struck by tragedy. Tristi posted this message on the Invest in ME Facebook group, “ just a quick message for those of you that havent heard. my eldest daughter (Maddi's elder sister) was on the pavement and hit by a drunk driver just over 2 weeks ago and had to have her leg amputated. hence things have been awful here and myself and maddi have had to put our ME fund raising on hold for now. when we can we will restart. in the meantime everyone keep up the amazing work you have been doing :) xxxxxxxxx” Our love and thoughts are with the family at this difficult time.

*  As said above, November also marked the 21st birthday of Rosa Amor. Severely ill and currently in a nursing home being fed by tube, Rosa was unable to celebrate in the usual ways that others of her age might, so instead she chose to use her special day to raise awareness and funds for the cause so close to her heart. We wrote about Rosa's 21st Birthday here - now updated as Rosa's Appeal is featured in an "editorial" piece about ME accompanying an ad by Invest in ME in London Business Matters magazine.  Rosa's Appeal is also in pdf here. The staff at the nursing home joined in with a pyjama day with all proceeds to Rosa's appeal and thanks to the support and generosity of a number of people, over £1600 was raised on the Just Giving page including Gift Aid. Goodwill messages were posted across the social networking sites and some people used Rosa's photo as their profile picture for the day. Her mother Julia said, “Rosa's Appeal has surpassed all our expectations. Check out the link to see her amazing total and all the different people who have supported her. We are so grateful to everyone.” Many thanks to Rosa and her family for their staunch support in helping to make hope a reality.

*  The above are some examples of all the amazing efforts to support our campaign, please email us at
fundraising4me@gmail.com if you would like yours to be added and do keep checking as we hope to add news as it comes in throughout the month and to make our summary of updates a monthly feature. For all information about the Let's do it for ME campaign for Invest in ME, please see the main website and especially the Christmas Shop page! Thank you so much for your support - Let's do it for ME!

*Everyone at Invest in ME perfoms the charity's work for free and all involved in the Let's do it for ME campaign are also volunteers, either with ME themselves or parents/carers or generous supporters, giving their time, talents and their own money to support this vital cause*