Happy Birthday Hayley!

Hayley Okines sem prvič videla pred leti ob ogledu dokumentarca in njena zgodba se me je tako dotaknila, da je nikakor nisem mogla pozabiti. Takrat je bila še majhna deklica, danes pa je praznovala 14. rojstni dan. Ima redko genetsko bolezen, imenovano progerija, kar pomeni, da se stara približno 8-krat hitreje kot drugi. Zato ima ogromno težav, ki se pojavljajo šele pri starejših ljudeh, drugače pa tudi izgleda - čeprav je najstarejša, sta bratec in sestrica večja od nje. Zdravila sicer še niso odkrili, so pa blizu in so že preizkusili več različnih.
I first saw Hayley Okines a few years ago, when I was watching her documentary. Her story touched me very much. Back then she was still a little girl, but right today is her 14th birthday. Hayley has a rare genetic condition, called progeria, which means that she ages eight times faster than usual. She copes with problems that are usual for older people and she also looks differently. The drug still hasn't been discovered, but the progress has been made.

Pa vendar Hayley ne pusti, da bi jo njeno stanje kakorkoli oviralo v življenju. Je kolikor se le da običajna najstnica, izredno pogumna in simpatična. Ravno zaradi tega sem si tudi tako zapomnila ogledani dokumentarec. Hayley preprosto ne moreš pozabiti.
But Hayley doesn't let her condition direct her life. She is more or less an ordinary teenager, she is very brave and very inspirational. You just can't forget her.

Povprečno otroci s progerijo živijo 13 let. Hayley pa je tik pred 14. letom s pomočjo mame napisala knjigo o svojem življenju. Prejšnji teden je končno prispela še do mene, vendar se je zaradi dela še nisem utegnila lotiti, ta teden pa jo bom končno prijela v roke in brez dvoma prebrala v hipu! :) 
An average lifespan of children with progeria is 13 years. Right before her 14th birthday Hayley, with her mom, has written and published a book about her life. I've got it last weak, but hasn't had the time to read it because of school work. This week I'll finally be able to read it, and there's no doubt I'll be done in a day or too! :)

Hayley's Book - front page

back page

Če bi kdo želel izvedeti o progeriji kaj več, si lahko to prebere na Hayleyini spletni strani Hayley's Page ali pa na spletni strani fundacije za raziskovanje progerije: Progeria Research Foundation.
If anyone would like to know something more about progeria, you can find information on Hayley's Page or on the page of Progeria Research Foundation.





Pa samo da ne bo dvomov. :) Knjigo sem si kupila sama, o Hayley pa pišem zato, ker progerija pri nas ni poznana, pa jo želim predstaviti. Morda se bo Hayleyina zgodba tudi koga drugega dotaknila tako kot mene.
Just so there will be no doubts. :) I've bought the book by myself and I'm writing about Hayley just because progeria is little known in Slovenia and by this post at least a few more people will know about the condition. Maybe Hayley's story will be as inspirational to someone else as it was to me.