Blog 2015

  

29.12

We rounded 2015 off with a trip to the seaside resort of Sarbinowo. We did have some minor medical emergencies upon arriving, but at least the weather made up for these inconveniences and we were able to greet the New Year with a smile!

 

Frequent trips to the seaside require a huge effort on our part, both organizational and financial, but we are convinced that they do bolster little Adam's immune system; thus, improving his chances at a longer and healthier life.

 

Go Adam! :)

 

 

 

 

03.12

Every week I spend some time looking at the most recent updates on food supplements which have been shown to improve the condition of CF sufferers. Recently I researched news on liposomal glutathione, cysteine, curcumin, genistein and taurine. A lot of information came from the website http://dutchmagicfactory.blogspot.nl/p/why-i-started-curcumin-and-genistein-in.html

 

Several academic and research centers around the world are currently looking into how these supplements might be of use in managing the symptoms of CF. The only research in Poland that we know of has been done by Prof. Węgrzyn of the University of Gdańsk.

I never thought I would regret not having obtained a degree in biochemistry :-)

 

 

 

 

16.11

This week we have been canvassing for support for a Change.org petition concerning the exorbitantly priced novel CF drug ORKAMBI.

Please sign this petition at Change.org! We are seeking to cause Vertex, a company that used more than USD 75 million of charity funding to develop a drug called ORKAMBI that has the potential to help CF sufferers worldwide, to lower the price of this – it's current price tag stands at almost USD 290,000 a year. We are asking Jeffrey Leiden, Vertex's CEO, who took home nearly USD 46 million last year, to reconsider the company's pricing policy as the drug has no chance of being eligible for reimbursement in Poland or afforded by private individuals.

"We are grateful to Vertex for creating invaluable medicine that will help our loved ones live longer, more fulfilling lives. But if we cannot afford it, it's as if it doesn’t exist at all. These prices strain taxpayers and the healthcare system, keep drugs completely out of the hands of those suffering from CF in developing nations and hold the potential to bankrupt families. It’s time for Vertex to switch to common sense pricing so that we can all have a chance at a healthy life."

Please sign and share!! Together we can make a difference! Thank you!

https://www.change.org/p/vertex-pharmaceuticals-jeffrey-m-leiden-stop-price-gouging-our-charity-funded-drugs 

 

03.11 

Krzyś' brotherly love came to life yesterday as Big Brother acted out a scene that combined a Star Wars-like fast-paced fight with the original idea from the 1987 movie Innerspace and the French cartoon series "Once Upon a Time... Life".

We were reading a book called "Mukolinek" (about a young boy who has CF but does not understand why physiotherapy and medication are beneficial to his health) and we got to a page showing a swarm of nasty-looking bacteria lurking in the boy's lungs and making him very sick. Krzyś leapt up shouting: "I know what I'll do!! I'll round up some friends, we'll miniaturize ourselves and take the entire fighter fleet for a mission into Adaś' lungs. We'll take our lightsabres, we'll give these nasty bugs a thrashing, and make Adaś healthy again!

The battle scene came alive, Krzyś kept slashing at the picture of the bacteria so hard the table was shaking like a space shuttle about to be launched into space. Seeing the pure delight in his little brother's eyes he made sure that Adaś was clear about who would participate in the mission: "You know Adaś, you won't be able to fly with us because we'll be inside YOU!" 

 

Hearing that, little Adam, who is already beginning to grasp the severity and nature of his disease, leapt up and began hugging and kissing Krzyś...  

 

http://miastodzieci.pl/wydarzenia/1:/57428:mukolinek-czyli-ksiazeczka-o-mukowiscydozie

 

12.10

Last week a staggering four adult CFers were given life-saving lung transplants in Zabrze (southern Poland)! Unfortunately, lung transplants are still not available to under-18s in Poland. Two weeks ago the CF community was shattered by the news of the death of eight-year-old Emilia and nine-year-old Julia (https://www.facebook.com/Pomóż-Julii-138720011493…/timeline/). Julia had already been put on the transplant list in the AKH Vienna clinic (the Polish NHS does not finance these procedures and most patients have had to self-finance them!). Unfortunately, her condition deteriorated rapidly and she died without being able to receive the gift of life :( 

We hope that pediatric lung transplants will become available in Poland, especially as Poland's exit from Eurotransplant means that Polish patients have very limited access to the Vienna Clinic (aside from the financial considerations – the procedure costs around EUR 150,000)
 

 

28.08

Mummy's article was published in issue 42 of the Polish quarterly "Cystic Fibrosis" ("Mukowiscydoza"), on pages 27 and 28. It was about the unique challenges of trying to live a "normal" life on vacation while juggling the medical needs of a CF child

http://www.ptwm.org.pl/images/upload/czasopismo/Mukowiscydoza_42_2015.pdf

 

TRANSLATION TO BE ADDED SOME TIME SOON  :-)

  

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21.06

Many thanks to the Art-Station Foundation! We love you, guys!!!

 

We were given the opportunity to introduce Adaś to the audience of the end-of-the-year gala performance of the students of the Art-Station dance school. Volunteers canvassed for donations and little Adam loved the show! 

  


 

A must-watch! The dance students show off their prowess in this energetic video:

https://www.youtube.com/watch?v=3v0rRFDSbQY

 

 

05.06

"I believe I can fly!" is little Adam's favorite self-invented beach pastime. The Sarbinowo promenade offers a unique opportunity to combine natural inhalations with exercise :)  Little Adam, despite his difficult surgical track record, is simply bursting with energy!!!

 


 

 

19.06

 


Twice a year we attend training conferences where the parents of CFers can see presentations by doctors and other healthcare professionals and share their experiences with other parents. It's also a good way to put a face to the names we so often see on our Polish CF Family forum!

 

This conference was organized by PTWM (Polish Society Against Cystic Fibrosis).

 

 

21.05

Natural saline inhalation in the Gdańsk suburb of Jelitkowo :)

We love the empty beaches outside of the busy season as it reduces the risk of catching an infection to a minimum. 

 

 

 

 

26.04

Little Adam's Birthday!! 

Due to the reduced life expectancy of CFers we once found it difficult to sing the traditional Polish happy-birthday song to little Adam as the actual words are "May You Live a Hundred Years".  This year we happily sang the song to Adam, and Big Brother Chris loudly sang his own version: "May you live an eternity!" :)

 

 

 

10.04

In April we were pleased to open the seaside visiting season. We find winters notoriously difficult. Due to the high incidence of viral infections, we avoid most social gatherings (so playdates are off!) and steer clear of any crowded public places, such as malls or museums. When spring comes we feel we can relax a little and make up for the lost time (although we still prefer to meet outdoors, just to be on the safe side) and we open our seaside-climate treatment season.

 

 

Exercise is vital for CFers as it improves the condition of the lungs and keeps the body better oxygenated!


 

 

For more updates see www.facebook.com/adasmuko

 

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