Author Archives: Dustin Hare
Alan Holt rowing a full marathon for Chiane and her brother Estian
Alan completed his full marathon yesterday, well done Alan!
Message from Alan:
I did it, don’t think I want to do it again anytime soon.
I completed the 26 miles (or 41,600 metres) in 3hrs 26m 56secs
A MASSIVE thank you to everyone that turned up to support, and to my 3 wing men that joined me whilst rowing (Damian Packer) Tim Shaw squeezed 20 miles a little to casually for me though.
Chiane Cloete I hope you feel better in the morning daddy told you had a tiring couple of days. We’ll see you I’m sure x
PR Statement from Alan:
I’m rowing 26 miles ( a full marathon) on a rowing machine at Club Kingswood in Basildon on Nov 16th to raise money for Chiane Cloete.
I have been in official training for about 4wks and am making steady progress. I’m up to 15 miles in one session which took 2 hours.
After reaching that that land mark I’ve not been back on as I’m finding it mentally tough to endure the boredom.
Good evening to you all.
Apologies for the late update. Everything that we are focused on at this point and time, is time consuming and it’s not “over night quick fixes”.
We are focused on the following:
1. education and support, 2. Chiane’s weight, 3. further treatments, 4. Physiotherapy and 5. Alternative treatments.
Chiane is doing very very well at the moment. We had so many meetings and appointments the last 4 weeks, of which one was with an endocrine specialists. Chiane will now be on hormones for the rest of her life as and when she needs it. Radiotherapy caused a lot of her glands to shut down completely. We went to a park the other day, we were all sweaty but Chiane. She run for 2 hours and were dry as a bone. All future hormone support will be establish through constant routine checks (for years to come).
We also discussed schooling with medical and educational institutions. Chiane will now need special needs help with school. In their eyes, the operations and brain cancer are seen as a permanent brain injury and “should be treated as such”. For now, we are home schooling Chiane and are getting very little outside support. As and when the authorities feel she is ready to go back to school. She will return to a school fit for her requirements and needs, but that is still far down the line. We don’t know yet when that will be, but it is a slow process that will take a long time. Until then, we are home schooling Chiane every day. It was also suggested that we should submit Chiane in to a class year, 1 year younger than her as her “growth rate” will be slower than her friends, and mentally, it will be better for her. As you all can imagine, this is a very intense process. We are swamped with paperwork, forms and meetings.
Currently, there is no visible cancer. We did the high dose thiotepa to push the cancer back as it was too aggressive for us to do anything. Now, there’s no visible cancer, which is good, but now, none of the cancer centres want to take Chiane in to fix her genes, because “there’s no visible cancer”… So good news, but at the same time the worst news! Not even alternative centres want to touch her, because the FDA has a finger in most of them and they’ll get shut down if they “treat someone for cancer who has no visible cancer”… Most centres “treats” cancer and do not “prevent” cancer. Until Chiane relapse, there’s not much that Great Ormond street or us can do…there is 3 very very good Genetic centres. 1) Pittsburg, 2) Vancouver and 3) MD Anderson centre in Houston. None willing to take Chiane until she relapse and the cancer comes back. We are trying our best to get her in to one of the above to give her the treatment she needs but we have had no luck yet. It’s frustrating to say the least, and yet again, mountains of forms and paperwork, hours on the phone and when you get no where it gets us just more motivated.
We are focused on getting Chiane’s weight up. This is not something that happens over night. As she gets more active, she burns more energy. We are slowly making progress gaining 0.5kg on a weekly basis.
Chiane is currently doing yoga to build her muscles, and she sees a physiotherapist every week. Her muscles are still tight and it’s a constant battle for us to get and keep her muscles loose. It was mention that she might need casts soon. Chiane can’t walk flat in her feet and tippy-toe 90% of the time. In itself, this is not a problem but when she start running it is a huge problem. Balance is obviously also becoming a problem if she is all the time on her tippy-toes.
We are still using all her homeopath medicines, are very very focused on the correct diet, nutrition and organic food are still at the top of her nutrition list. Chiane is continuing hyperbaric oxygen therapy.
As you can see, we are running at 110% miles an hour to get Chiane back to a “as normal life as possible”. However, her days are packed with alternative treatments and supportive treatments. Our main focus above anything else, is to get her the correct gene treatment which currently, as a huge challenge because no FDA approved institution is interested to take Chiane.
We will do another update in 2-3 weeks, hopefully with good news regarding gene treatment.
Thank you for the continues support and prayers, fund raising and help at home.
Drou running half marathon for Chiane – raised over £1200!!!
On the April the 1st Drou ran a half marathon to collect funds for Chiane. She managed to raise a grand total of just over £1200!!! Drou said that it was tough but knowing that she was doing it for such a brave little girl helped her to get through it.
Well done Drou and and thank you very much to everyone who supported Drou and Chiane by making donations!
Tim Shaw Running the London Marathon for Chiane!
Tim ran the London Marathon for Chiane yesterday and did very well. Finishing in an absolutely fantastic time of 4hrs 17mins.
Well done Tim we are all proud of you, especially Chiane!
Update from Tim 23/04/2012:
Thats it ‘DONE’ ! Finished in 4.17.03 ! Really chuffed, legs a little Sore today but to be expected ! The weather was really kind to us .All together a fantastic and emotional day! It was worth all the hard work, I won’t lie to you but thinking of Chiane helped me through I tough parts of the run!
Update from Tim:
5 days to go ! Training finished now ! I did 22 miles the week after the 20 . Then a 11 and 6 the two weeks after, a couple of light short runs this week , I’ll be going to London on Saturday all ready for Sunday . Look out for me on the tv ! I’ll put a picture of my shirt on my Facebook page !!
Wish you all the best for the Marathon this weekend and I am sure that all the hard work will pay off.
I will be keeping everyone posted on Tim’s training progress and how he has done on the day. If anyone is interested in sponsoring Tim please get in touch with myself or you can find him on Facebook.
GOOD LUCK TIM!!!
Martha’s Krispy Kreme Sale
Martha and 10 of her friends held a Krispy Kreme sale, it was a big success and they raised £310!
Message from Martha:
We held a Krispy Kreme Sale last week and myself and about 10 of my friends managed to sell 35 boxes (dozen in each) of doughnuts and we raised £310!!! I sold them at Dame Alice Owens and at 1st Grange Park Girlguiding. Even if people didn’t buy a doughnut they still donated as they were astonished by Chiane’s bravery, especially for a six year old!
Krispy Kreme has a great way of raising funds. If you are interested in doing a similar fundraiser to Martha’s, go to Krispy Kreme’s website for more details.
Well done to Martha and her friends for the hard work!
3 Course Meal At The Maharaja Restaurant – 15 February
Kevin Welby and his wife Sarah arranged a curry night to raise money for Chiane. Everyone enjoyed it and it went so well that they are really keen to organise another.
Well done to both of you and a big thank you for everyone that went.
Email update from Kevin Welby:
Thank you very much to everyone that came to the Maharaja. 130 ppl came along and everyone looked like they enjoyed themselves. It was such a great evening, I’m wondering if we should organise another one ???
Thanks again to Mr Ali and his Maharaja Staff and all 130 ppl for attending and making the Evening so Special.
If anyone would like help organising a Fund raising meal for Chiane Cloete in their area, let me or Sarah Walby (077 3603 6013) know and we will help you!!!
Last few tickets remaining fo our Fund raising Buffet meal in aid of Chiane Cloete. We have a Live Singer, Late Disco and some fantastic Raffle Prizes including a Weeks Accomodation, Comedy Club Tickes and much more.
Call 07736036013 for more info. Tickets are £15 per Adult and £10 pr Child.
Eastfield Primary School sponsored £80 for Chris’s Fund Raising Walk
£80 was raised by staff at Eastfield Primary School to sponsor Chris’s recent fund raising walk. The contributors were: Chris Luck, Jane Perryman, Graham Hicks, Dan Brown, Mary Ardern and Mary Price. Good luck and best wishes from us all.
Alan Holt raised £400 by challenging friends to game of Racquetball.
Racquetball with a nasty frock!!!
Email from Alan:
On Dec 23rd I charged 4 of my friends £10 each to play me at racquet ball at Club Kingswood with me wearing a nasty frock. Afterwards I went up to the bar and managed to collect another £310, plus the £40 and another £50 from my colleagues in the office. Had a great time, met some lovely people (including a terminal cancer sufferer and his family), made some knew friends, spread a lot of awareness for Chiane and collected £400 – best days work did in all of 2011. Almost forgot, I did a platelet donation that day as well and got £22 off the nurses.
Carol singing at Enfield Town Centre
When I was collecting sponsorship for the ‘Sponsor a Star’ event, I asked a lot of people at school to sponsor me. One girl, Emma, came up to me a couple of weeks later saying she wanted to organise some carol singing for Chiane as her story had touched her so much. I agreed to help her as it is such a worthy cause.
It took a lot longer than we anticipated to organise, but after about 20 phone calls to goodness knows how many people, we were finally allowed to carol sing somewhere! That somewhere was Enfield Town centre. It was all very last minute but eight of us were there, standing in the freezing cold, with our Santa hats, special t-shirts and tinsel covered buckets ready to sing carols. We had over three sheets of songs, ranging from the traditional ‘Away in a Manger’ to ‘Santa Claus is coming’ to Town’. The two hours were full of mishaps, including a bee attacking our bright yellow buckets, seeing lots of people we knew and being told to move by a security guard- in our defence we didn’t know that where we were standing wasn’t public pavements!
Even though we got very cold and our throats by the end were quite sore, we were very glad we did it for such an amazing little girl. We raised £167.67 so we knew those two hours of coldness were worth it! Thank You to all the other girls who turned up!
Thanks for all the help!
Enfield Grammar Boys rising to the occasion!
Enfield Grammar boys have really risen to the occasion and came up with some fab ideas for Chiane’s charity – we are doing a cake sale this Friday, and the boys are allowed to come in to school in non-uniform on the 21st when we break up with a one pound donation – we have about 1200 kids in the school so that’s going to be a good drive! Some of the year 12′s are sorting out a staff vs sixth form football match (sponsored) and some other ideas are in the offing.