Dear Friends! I have great pleasure to inform you that Tysabri is going to be financed by the Polish NHS from the 1th of July.

I've been waiting for this moment for 2 years, not to mention that with we've been fully involved in pushing officials to implement Tysabri drug programme in Poland. What a joy and relief :)!!

The regulation according to Tysabri drug programme says that the NHS is going to pay for the treatment up to 5 years. It's pretty long time, but I wish I would live in a place where patient is provided necessary drugs as long as it's needed. However, that's HUGE change for MS patients in Poland and we received enough time to deal with this problem later on.

As for now, I need a rest after long and exhausting fight for my MS treatment. Dear Friends! Thank you for your support. You know that without you it wouldn't become true. This success has many fathers and tomorrow is our great day :)!!

I wish you all wonderful holidays!!

Kamila

Dearest all!

The most recent news are that… the total amount of money raised for Kamila's medication - Tysabri is about £5000 = 25000zl!!!

On the UK account itself we've raised £2908.98. The rest, approximately 10000pln are raised at the charity account in Poland. Last week I made the first transfer from Britain to Zlotowianka charity which buys Tysabri for Kamila. I'd also take this opportunity to thank every each one of you who sponsored me and put so much trust in my self. Yesterday thanks to God and Fathers - Dominicans at St. Albert's chapel who enabled me to ask their parishioners for donations. From this opportunity itself I've raised £820.55.

Thank you from the bottom of my and Kamila's heart!!!

Now, when the marathon is over and I am fully recovered, I can share with you what it was like to run 26.2 miles = 42.195km.

I still can hardly believe that I managed to do it. Thanks be to God that he has given me capable legs, strong heart and iron will! And of course, that he has given me Charlie without whom I would never ever glide through this wonderful run!

We started the raise at10am on Sunday the 26th of May. A day before we met with Charlie at mines to cook some food. We ate a lot of spaghetti/pasta. On Sunday morning each of us ate a big bowl of porridge.

I was extremely stressed at the starting line. I had a stomach-ache. I felt strong in mind and in body but very anxious about what is going to come. At a last minute Charlie and I decided to go to the toilet. We gathered at the starting line and when the runners were let off, we started like arrows! Until mile 8 we were at the front! I felt very strong. I run, I run, I run. I drunk a lot. I'm sure I drunk over 3 litters of water. I ate 4 jellybeans which Charlie handed me while running and I also had something which was disgusting in taste and looked a bit like melted, warm ice-cream. It was supposedly given to give the runner more energy. At mile 16 I started to feel some mental resistance and physical tiredness but we kept going with Charlie. I walked at points of the route but it was a very fast, brisk walk, almost like a jog. We never stopped, not for a second! I remembered from what I thought before, that the most important thing is to go forward! No matter in what state; running, walking, crawling… but just move forward towards the altimeter aim: the finishing line! The worst was mile 25 for me. 600 yards before finishing I started to feel pain in my legs and knees and I almost cried. Charlie said: "No way, we are not walking across the finishing line! Not in front of all our supporters and… cameras!". So, what could I say? I just run…

I felt so much happiness!!! I felt happiness that we've managed. I was all wet from sweat and water. I cuddled mum, Anna, Kamila and Marta who brought me a wonderful handmade by her cherry cake!

Words cannot express all the feelings that I have had since the marathon. I can thank a thousand times and it won't be enough, to Charlie, all our wonderful supporters, all our sponsors, all my friends and people who promised to think and pray for me. I really hope this marathon will bring a lot of good things: first and for most, medications for Kamila! But also much positivity, faith in life and God's guidance!

Life with disability is a marathon, run it all with love in heart for others! There are hills, there are valleys. There are supporting, loving people on many parts of your route. If they are not there you must fight with yourself. You pray, you sing songs in your head, you admire and share your run with other runners around and it's all to get to the finishing line and say: I've done it. I've fulfilled the promise, met the challenge, overcame sorrow, faced the tragedy, benefited from opportunity, admired beauty, realised the dream, completed a duty, accepted the struggle and dared the adventure .

I still haven’t chilled out after Sunday’s marathon.

Agata and Floss – the guide dog – picked me up from the airport on Thursday. I was really impressed with how indipendant Agata is. We spent 3 wonderful days before the marathon doing sightseeing and enjoying our time together.

On Sunday 26th of May at 10:00 Agata and Charlie – guide runner – crossed the start line after 8 months of training. Together with tens of thousands of marathoners (media reported that 30000 runners took part in the race, but this number included also half-marathon runners) girls started their run.

I was easily congaed with the atmosphere shared by thousands of excited people at the start point. Just like Agata, many runners dedicated their run to particular charity. The largest group represented charity foundations for patients with cancer, but I also saw many runners in orange t-shirts representing the MS Society. Agata’s running partner Charlie run for MNDA Foundation.

There were also lots of amused people dressed up and painted in a funny way. Scooby-doo, Cow-man, spiderman and even barely walking man in the knight’s armor were some of them.

We saw girls out at start-line and went over through closed Edinburgh street at finish line to see their 42km195m defeat moment.

We managed to find a piece of space where we could watch marathon heroes.

Thanks to the fact that Agata run with her iPhone, Ania - Agata’s sister could follow the girls on the application called Find Friends. We couldn’t believe how fast they were moving forward towards the finishing line. After some time, we were told by friends who were cheering at different points of the route, that Agata and Charlie keep themselves at the front line of the runners. Pride,  pride, pride! :)

The girls have been preparing to finish the rase in 5hs. From what we could see on Find Friends, they were going to be at the finishing line earlier than that!  We managed to find a free space 30m before the finishing line and from there we were watching the heros of the run. Some marathon runners were suddenly getting supernatural energy and strength when they noticed the finishing line and they were sprinting fast. There were also others who lost their consciousness and fainted just before the line, or runners who were crossing the line with their children handed across the band. There was also a man who completed the last mile running and pushing  a woman on a wheelchair. In many people injuries were clearly noticeable. A woman was carried by two helpers after she collapsed only 40m before getting to the finishing line. All this made us even more concerned about Agata and Charlie, however, Find Friends was showing that the girls are constantly in move and they are getting closer and closer to the finishing point.

And suddenly, finally our two heros appeared from behind the last finishing corner. In a steady run they concurred the last straight peace of the route where we welcomed them with enormous cheering.. They made us exceptionally impressed, moved and proud!

Agata and Charlie completed the marathon in 4 hours 40 minutes and 42 seconds so 20mins earlier than they were training for. I was exceptionally happy that I could be with Agata, cuddled her when she was out of breath, and be able to share the enormous happiness from this wonderful achievement! It was wonderful, fantastic and unreal!

Thank you, Agatka. Thank you also to Charlie whose contribution to the great success cannot be expressed.

I can’t find words to express how impressed and inspired I feel by what you have achieved. You are both amazing!

Thank you also who supported out marathon action in any possible way. Only because of your commitment and support this run has had such an exceptional value!

We will soon update you on the money that we have managed to raise during the whole event Inspire Kamila 42km195m. 

Dear friends!

We've been counting down days tip the marathon since yesterday; now - together in Edinburgh. :) Agata and Floss picked me up from  the airport and we immediately headed off to concur the city. Edinburgh is wonderful. We stay straight at the castle, on the top of a hill from which you  can see the whole city, the Fife and the pentland Hills. It's all like a  fairytale!

Yesterday we visited the Old City. the university campus (George Square) and a cafe where J. K. Rowling wrote Harry Potter. Today we went to Edinburgh Castle which is next door. We also went to  Natural History Museum where the sheep Dolly is.

The weather is beautiful! I would really like it to be as good as it is now, on Sunday. Many people will support Agata on the route. There will be a massive crowd of them - a part of whom I have already met. Yesterday I met Lukasz who is a coach of a Goal Academy which is a football club for teenagers. He will come with a whole group of teenage footballers. There will also be a bear wearing our t-shirt: Inspire ;)!
 
This support must give Agata strength and power!
  

Hello! I'm back on our blog. It has been an intense couple of weeks so it was difficult for me to find time to update everyone on what is happening with our campaign.

Two important events which I would like to share with you are: a cycling challenge on Sunday the 11th of May and a bake sale on the 17th of May!

The cycling challenge was organised by the Guide Dogs Association UK. My sister Anna and I did it on a tandem. It was going to be a good training for my marathon… We did 56 miles (90km) riding from Glasgow to Edinburgh along the canal. It was very wet, muddy, cold and dangerous… We had a big, male bike which was an additional bother… Plus, we were forced to carry the bike over narrow railings that were designed for single bikes. We completed the challenge with Anna and we were really proud of ourselves!

Last week on Friday Anna and Linda organised a wonderful bake sale outside the main library which raised over £200 for Kamila's medication! The girls were wonderful. Anna and Linda were selling hand painted jars with Finish Cookies that were very popular. Everyone who contributed to the sale was wonderful! There would be a very long list of names if I decided to thank all of them so please, don't be angry with me that I won't mention all of you! A big, big thank you to Anna and Linda for baking, Nikki for her artistic input, Wiki for pizza for lunch, Rachel for helping with selling cookies and being with us to the very end!

This last weekend before the marathon I also went for a retreat. So straight after the bake sale finished I drove with my friend Gosia and her husband to Nunraw where I spend 3 days gaining spiritual strength and faith, among other things,  for my run this coming Sunday!

Dearest all! It's only few days left. I'm waiting for Kamila to arrive in Edinburgh on Thursday. I just can't wait to see her and to give her a big, big hug on the arrival! I'm sure we'll write more when she comes over here.

Dear Friends! With great pleasure I'd like to announce that Agata's marathon run was supported with another 575PLN and 287,67 GBP. Thank you so much for your help :)!

The Polish Community Newsletter released news about the Inspire Kamila campaign. You can see it on page 11.

http://www.issuu.com/gazetapolonijna-scotland/docs/gazetapolonijna_scotland3

In addition, I attach link to the local news service (in Polish) about the debate regarding treatment of multiple sclerosis I was invited for. The debate held in Gdansk on the 26th of May.

(starts at 13min. 30 sec.)
http://www.tvp.pl/gdansk/informacja/panorama/wideo/26042013-1830/10892930

The National Health Care officials promised that 40 patients in our voivodeship would get access to the second-line treatment. This is very good news while this number was initially much smaller. However, there is no positive decision for Tysabri in Poland so far. I need to wait a bit for my green light...

This week I'm slightly late with my blog post but it's all because of all the things related to the fundraising and training that keep me busy or, as my friend Tiffany says, make me run like a crazy chicken… :)

The most important news with regard to my training are that on Friday Charlie and I run a half marathon round Arthur's Seat (4 times) in 2.05hs. We were both proud with ourselves! We run in rain and stopped only because of safety reasons, 4 times to cross the road.

On Wednesday I started my first ever payed job so it was exciting to me. Today, on Saturday I traveled to Glasgow for a training for my voluntary work with deaf blind people in Scotland. I write about it because among other thought provoking experience of being trained how to communicate with a deaf blind person, I also met a man, Steven, who is deaf blind and who run the London Marathon last Sunday! Of course, he inspired me even more and made my spirit grow!

Tomorrow I will be going for a run in the Inverleaf Park with Shauna so can't wait. :)

I must apologise as I haven't had time to go to the bank this week to check how much money have come to the UK fundraising account so I can't give you the numbers, however, I promise, I'll do it as soon as I can!

Today I went to St. Andrew's church where a choir of Polish physicians from Poznan had their concert. I left them a lot of leaflets and passed the message about the marathon run! I also met few people that want to get involved in helping raising money e.g. Mrs Duncan who offered her book signed by a famous writer to be auctioned for Kamila! :)

Yesterday I finished the 10th treatment of the cryogenic chamber therapy. As promised, I will now write few words about my experience. To summarise, during these 10 treatments a patient spends approximately 3 mins per treatment in a chamber where the temperature lowers to -110 Degrees C. One walks round the chamber without many clothes. Actually, the less clothes the better, although one must protect ears and ware thick socks and gloves. Plus a mask to warmer the air a bit.

I didn't have any problems with managing the 3mins. Perhaps I should add that it was my  fourth series of treatments in life so I suppose I've acquired much resistance to extreme circumstances.
The only feeling with regard to my body I had, was that it stiffened as a reaction to cold as if it was to shrink. It didn't hurt. I only felt a slight discomfort. My breathing was quick and sharp because I didn't want to gulp the cold air. I didn't talk while walking either. 

My expectations towards this series of treatments are especially:
1. To decrease the stiffness of my muscles, especially of those of my left leg.
2. To strengthen the muscles and make me fitter.
3. An Injection of energy!

The increase of energy and a greater strength were apparent. I could exercise more and for a longer time. It's a very pleasant feeling when you get out of the chamber and your body starts to get back to the normal temperature. A pleasurable excitement.

Unfortunately, in my case, strengthening of muscles immediately is coupled with additional, unnatural stiffness. After the treatment, the left leg becomes much stronger and at the same time - extremely stiff…
I was fortunate to obtain the series of treatments provided by the Polish National Health Service, however, I've heard that healthy people who exercise intensely can also take advantage of the cryogenic chamber therapy. If requested privately, the cost of it is 400zl per 10 treatments plus a visit to the GP.
My treatments took place in the Rheumatology Health Centre which is a hospital in Sopot. It's a very COOL place! :) I will definitely come back there again.  I send my warmest  greetings to Mrs Ola and my freezing companions who can be seen on the pictures :) See you soon! :) 

We’ve got the charity foundation account statement update and simply can't believe the numbers! We are incredibly happy to tell you that the marathon campaign has already brought impressive results!

Thank you so much for your help and the appreciation of Agata’s effort. In particular, I’d like to thank the donors who sponsored one month of the treatment and the donors who supported me with 1000pln. Thank you for your generous help which allows me not to worry about money for the treatment for more than a month :)

Since the 1 of April we have already raised 8100pln and 367.60gbp!!

More and more people declaire their help, Inspire Kamila 42km 195m becomes more and more intense and exciting :)

Agata shares with me every good news and I’m so impressed to learn how many people want to join the campaign in Scotland.

I know about help from Mrs Zosia who represents the Iverness Polish Association, about Mr Czesław – war weteran, Mrs Lucyna who sells pens and hands out the maraton leaflets and Łukasz who runs a local Polish football club is also involved.

Thank you very much, it’s so good to hear about you :)

I’m sending warm greetings from Poland!