9th Feb 08: Just back out of hospital from a 2 week stay. The doctors want to put a camera into my belly to see what is wrong. They say i will have to come back next week so they can put me to sleep and have a look.
15th Feb 08: Hospital telephoned to say i have to go back in on Monday, the doctors are going to do the procedure on Tuesday
18th Feb 08: Back into hospital this morning. Doctors say that i have to get blood taken, and not eat after 3pm so i can be ready for surgery tomorrow morning. Hopefully this will give them an idea with what is wrong with my tummy
19th Feb 08: Went for the procedure today, daddy held me while they put me asleep. Afterwards the doctors told my mummy and daddy that they couldnt see anything wrong so they have to start considering what else could be causing the trouble. Its just something else we have to figure out.
20th Feb 08: Home again today, but not before the doctors repeated blood tests.
22nd Feb 08: Back to the hospital today for more blood tests. they were just to monitor my blood sodium levels. All a part of my condition.
23rd Feb 08: Had my first real spoonfeed today after doctors gave us the word we could try. Will take some getting used to, but i still get a bottle of my special milk too
29th Feb 08: Couldnt sleep at all overnight. My sleepy medicine didnt help and i was up from 4am. I can stay awake for 3 days straight, which is a known part of my condition. I hope i sleep better tonight.
6th Mar 08:
Back into hospital today. Was very sick this morning, vomiting a lot and couldnt take any water or milk. So i got dehydrated quickly. With my type of diabetes that can be dangerous so the doctors decided to keep me in, and put an IV line in for fluids.
7th Mar 08: After spending the night in hospital im back home again. Doctors were happy that i was not vomiting anymore and back to normal form.
23 Mar 08: Sunday Life put me on the front page with a story of what i want to do. See below right in "Dakota Makes The News".
28 Mar 08: We are so grateful for all the support we have gotten so far. Really we cant thank you enough for this.
31 Mar 08: The Sunday Life ran another piece, thanking everyone for the support so far. You have all been great
8th April 08: Someone stole a collection tub in Ballymena which had £100 - £150 in it. Exactly how low do you need to be to steal a charity collection bucket.
26th April 08: The Antrim Walk went well, at least the rain stayed off for us. Thanks to all who went.(PICS HERE)
2nd May 08: Ashers held a donut day today, with all proceeds going to help my appeal. Thanks to all involved and also to all who bought donuts.
5th May 08: Me, Mummy, Aunt Roberta and our neighbour Joy done the Belfast marathon walk with my cousin Ellie and Shannon. It was a great day and the sun was shining. (PICS HERE)
7th May 08: Lindsay Cars in Mallusk held a coffee morning today. I stopped by and had my picture taken with the girls. (PICS HERE)
9th May 08: Went to the bank today to lodge money and found we are just over the £10,000 mark. Fantastic folks, thanks to all who have helped so far. We are now a third of the way there.
12th May 08: Was in the Sunday Life again yesterday, just an update on how things were going. Was in the Newtownabbey Times on Thursday too, Was also in the Ballyclare Gazette on 14th May. Keeping people updated is the most important thing.
18th May 08: Went with Mummy to the beauty day in Whiteabbey Community Center, had a great day. Thanks to Lindsey, Louise and Katrina. (PICS HERE)
24th May 08: Was at the Ballyclare May fair today, the BBQ Woodsides held was great. Thanks to all involved. (PICS HERE)
26th May 08: Woodsides Handed a cheque over for £1500 today, they fundraised all week. Thanks a lot folks. (PICS HERE)
6th June 08: It was Kingspark Primary School sports day today, Thats Jillian being kept busy selling the raffle tickets for the Kylie Concert. In the background you can see the queue for tea and coffee, which the school donated all proceeds to my appeal. Thanks to everyone involved. (PICS HERE)
18th June 08: Thanks to Raymond and his lovely wife, who done a street collection today in Larne raising £221. Raymond played music and held a draw for a trip to Scotland. (PICS HERE)
23rd June 08: Massive thanks to Jillian Phillips, who raised £484 with the Kylie concert ticket draw. The tickets were won by Jodie Orr, a pupil of Kingspark Primary. Kingspark also raised £260.93 with a Tuck shop sale and tea and coffee sale with the help of the Spar. Thanks all.(PICS HERE)
26th June 08: Mummy, Nanny, Auntie Roberta and mummy's friends Lisa and Lisa were at the Kylie concert tonight collecting. They collected £372. Thanks to all who donated. (PICS HERE)
27 June 08: Kingspark Spar held a fun day today. Despite the wet weather everyone had great fun. There was a bouncy castle, face painting, food and drink and balloon bending. And no small amount of wigs and photos. Thanks to Spar and Hendersons, the face painters, balloon benders and also Tayto crisps and Mr Tayto himself. Was a great afternoon. (PICS HERE)
30th June 08: Went to the bank today and we are now just over £21,000. Fantastic. Two thirds there.
2nd July 08: Tickets for the night in the Nortel club on August 22nd are now available.
7th July 08: Manchester United sent me a signed first team ball to auction off. A really huge thanks to Sir Alex and all at Manchester United for it.
16th July 08: The Europa Hotel donated a night in a Double Executive room, with breakfast, This is a really fantastic prize, and we are raffling it off for £2 a ticket. You can enter online by clicking HERE. Thanks to James McGinn, Lynsey Carroll and all at the Europa Hotel, Belfast.
24th July 08: The ASDA bag pack on Saturday and the Beauty Day on Sunday went fantastic. A big thanks to all that helped out and donated.
10th August 08: Was in the Sunday Life today with a double page about the Man Utd signed ball (click above to see).
14th August 08: Had the cold the last few days so i had to get my steroids doubled.
22nd August 08: 1st Newtownabbey Linfield supporters club held their annual "Billy Neill" charity football match last night. They generously spilt the proceeds between me and the childrens hospice. They presented mummy and me with a cheque for £500. Thanks guys, its really appreciated. (PICS HERE).
The night in the Nortel Club was fantastic, everyone had a great time. Thanks to all who came and also to all the businesses that donated raffle prizes. Thanks also to The Traynor family, who donated a massive "Me to You" bear for the auction. (PICS HERE)
24th August 08: Daddy has been busy updating the site this morning. There are new pictures and a video added to the photo album, a facelift for the Man Utd ball page, and a few other bits and bobs.
28th August 08: A great night was had by all at the country music night in the Ramble Inn. Thanks to Danny for all his efforts, and to everyone who went and made it a fantastic night. (PICS HERE)
2nd Sept 08: After a few days of website mayhem things are back to normal. Daddy added some interesting videos under the Information tab. be sure to check them out.
4th Sept 08: Ricky Hatton sent me a signed poster today. Mummy and daddy are going to get a frame for it and it will go for auction also, keep your eyes peeled on the site for it, and a massive thank you to Ricky, and good luck.
18th Sept 08: Things are starting to slow down on the fundraising front, if anyone has any ideas please use the contact me form and let my Mummy or Daddy know. We are so close now too.
25th Sept 08: Went to the hospital today for a full blood work up to send the results to China. Just another step in the process.
2nd Oct 08: Matt from Bluebird Media was out this morning to do some filming. Mummy and Daddy went over the story of my condition, the treatment, and also the fundraising. Thanks to Matt, and best wishes on his upcoming new arrival.
5th Oct 08: A big thanks to Betty Burns, who held a line dancing night in the Ramble Inn on Friday.
10th Oct 08: Thanks to all at Camden Group, Antrim, who raised a fantastic £610 to go towards the fund. Great work Folks. (PICS HERE)
13th Oct 08: Mummy and Daddy actually managed to get a night out, they went to the Stephen Nolan show and had a great night. They thanked Stephen for having daddy on the radio about my fund. (PICS HERE)
18th Oct 08: The bag pack in ASDA, Shore Road went fantastic. We collected £759. Thanks to all who helped out. Also a big thanks to ASDA and everyone who threw money into a bucket.
20th Oct 08:
We received word tonight that we will be starting the treatment on Feb 3rd. Its great news and i cant wait. Although we still have about £3500 to go we are confident we will get there somehow.
02th Nov 08: Was in the Sunday Life today. Thanks for the great article John. You can see the story here
21st Nov 08: We moved house so everything was chaos for a few days. We are in and getting settled in the new house now, although mummy and daddy say the boxes never end.
28th Nov 08: The school reunion night went well and everyone had a good time. Pics here
29th Nov 08: Thanks to all for the fundraising night in Doagh. Hope everyone had a great time.
1st Dec 08: Congratulations to Liz McIntyre who was the winner of the "Night In The Europa", hope you have a fantastic night Liz (Pic Here). Also congrats to the winner of the Man Utd signed ball who wished to remain anonymous.
23rd Dec 08: Thanks to Wesley Cowan who arranged for a signed Rangers shirt to help with the fund raising. You can see it here
17th Jan 09: We have all just got over the dreaded flu that is sweeping NI.
18th Jan 09: Thanks to all at the "Night at the Races", especially to Nigel, Wesley and Bobby who organized the whole night. Fantastic guys. (Pic Here)
23rd Jan 09: My story was in the national papers today and the response from it was fantastic. So many people emailed daddy with SOD children. Mummy and Daddy are both over the moon that we have given hope to others out there. If we can help anyone else with advice or anything just get in touch using the contact tab at the top of the page. And Good luck with the fundraising to all that were in touch and are going to go for it.
4th March 09: Dakota will be in the nationals tomorrow, HERE, HERE, HERE, HERE, HERE, HERE and HERE
5th March 09: What a day. After appearing in practically all the nationals the phones and emails have not stopped. But its all good, and hopefully someone else out there can benefit from our experiences. Also went on UTV Live tonight HERE. Click the small box under the top picture to view the full story as it was on TV. Just for giggles today i Googled "Dakota Clarke" and got a mountain of results. Cody is a celeb for the minute and she knows it.
7th March 09: After a few really busy days back home hopefully things have settled down a bit. Thankfully the word has now spread to others with families of SOD and ONH kids and they have been in touch. Anyone else out there that wants to know how to go about getting the treatment please contact me on babydakota@googlemail.com. It would be helpful if you could include a contact number as there is a bit of explaining to do and vis phone is a lot easier. Dakota has been doing well since we got home, and everyone is noticing the difference in her. She has went from baby to little girl in one huge step. Also, i really would like to set up a website to act as a UK support group for people with SOD/ONH. Anyone with any web experience that would like to help can contact me.
8th March 09: I have set up a temporary forum board for discussion on all things SOD/ONH related as well as somewhere for people hoping to go for the treatment to discuss things. It would be fantastic if everyone could join and maybe we could have the beginnings of a UK based parents support group going. You can find the boards HERE. I have also added a chat feature which i will hopefully have up and running soon.
9th March 09: Daddy done an interview with Insight Radio, the radio station for the blind and partially sighted. You can hear it HERE
12th March 09: Anyone who has contacted me and hasnt had a reply, could you please email me again, i have had a few emails come back as undelivered but cannot find the address's.
13th March 09: Got word today that we will be on This Morning on Tuesday morning. Phil and Fern watch out :)
15th March 09: Thanks to John for another great write up in the Sunday Life HERE
17th March 09: Went to London Yesterday, we done all the tourist bit, and took loads of pictures. We also went on the London Eye which was great fun. Then this morning we were on This Morning on ITV with Phil and Fern. Was a good experience and i talked all the way through. Afterwards we went to Madam Tussauds, then back to the hotel before flying home again. Thanks to the guys at ITV for giving us a fantastic few days.
4th April 09: The Spar had a fun day to celebrate my birthday and the great results we had in China. Pics HERE
9th April 09: Cody took her first unaided walk last night, was so cute. Check it out HERE
21st April 09: Went for a test for glasses this morning, i dont need them at the minute but have to return in a few months for recheck. Also went to the Royal Hospital for an Electrophysiology test, we are just waiting on the results for it.
30th April 09: Spotlight will be aired on Tuesday 5th May, at 10:35pm on BBC NI. This was made before, during and after our trip to China. If you are not in Northern Ireland you can watch it on Sky on channel 973, or on Virgin on channel 863 (although im not sure about the Virgin one). It will also be available on the BBC iPlayer (http://www.bbc.co.uk/iplayer/) do run a search for spotlight in the search box at the top of that page.
We also got the results from the electrophysiology test this morning, the test showed no change since October, but to be perfectly honest, its what i expected from it. The proof however, is in the pudding. Seeing what has improved with Dakota, both visually and otherwise is how i judge success. Although they may give ammo to the skeptics out there, anyone who wishes to see how Dakota has changed need only come and knock my door. I still stand by what i said, i recommend anyone to give this treatment a chance. If we had the money now, i would not hesitate in taking Cody back tomorrow. The bowel problem clearing up alone would have made this all worth while for us, so i urge everyone, dont look at this as a set back, as we still stand by our word.
6th May 09: Absolutely disgusted at The BBC. Feel betrayed beyond belief. Why not have an ad saying we are liars and save the half hour program. Completely let down by everyone involved in that.
8th May 09: Still not completely calmed down after that, but maybe enough to rationalize my thoughts a bit. For anyone who watched the program, i hope everyone keeps in mind that regardless of what they said, Dakota has shown improvement, not just visually but in overall health. I refuse to accept the accusations that not only us, but the hundreds of patients out there have somehow brain washed themselves into believing that they changed for the better. There are a multitude of doctors out there would would have been more than happy to argue a case on the treatment side, all the BBC had to do was ask and i could have pointed them in that direction. Yet that wasnt going to work to their agenda. Instead they had to make us a family, and the many others out there look like weak minded idiots. I hope they sleep well in their beds, as i know i will knowing that my once blind daughter can now see, and its thanks to us having the courage to fly in the face of western bigotry and media hype to say otherwise. There is a line from the movie Goodfella that sums up how we feel "See, your murderers come with smiles, they come as your friends, the people who've cared for you all of your life. And they always seem to come at a time that you're at your weakest and most in need of their help.". Applies to the makers of that documentary quite well i think.
10th May 09: Uploaded the first of many videos i intend to have on here. Check under the Video tab at the top of the site.
11th May 09: Thanks for everyones support on the issue of the program that went out last week. We were genuinely concerned with the portrait the BBC painted. Its nice to know that the vast majority seen through it and have commented on how much bias was shown.
20 May 09: So its back to normality again, and time to get on with planning the awareness event. Im still hoping for August 1st. Anyone who i forgot to email (im sure there is a few) and is interested in coming to Manchester for it, could you drop me an email to babydakota@googlemail.com. Im trying to get a grasp on numbers, as if people wish to stay overnight we can approach hotels and see about a group rate.
29th May 09: Imogen and the family made the trip over again from Scotland and called in. The weather was fantastic and we had a BBQ and a good chat. Pictures will be up soon guys, and was great to see you again. PICS
07th June 09: Done an interview with Insight Radio, mainly concerning the media coverage since we got back. You can listen to it HERE
16th June 09: The Awareness day is confirmed for August 9th and will be held HERE. Hoping the vast majority of people who have been in touch can make it, as there will be lots of great info and a chance to get a few ideas about where you are going and what to expect. I have organized a lot of past patients who will be attending and speaking. Should be a great day. The day is open to anyone at all who wants to find out more about the treatment, so feel free to come. Should be a really good day all round. Anyone wishing to attend and needs to stay can contact me and ill give you the info.
31st July 09: Anyone with any doubts should watch these videos HERE