SMA = constant fighting for this little life... We all help for Xavier!

Person verified by the Siepomaga Foundation
1,552,237 zł
Supported by 82,315 people
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Goal
leczenie i rehabilitacja

Ksawery Rynkiewicz, 2 years

Bartoszyce, warmińsko-mazurskie

SMA - spinal muscular atrophy type 2

Started: 18 June 2020
Ends: 19 December 2020

Poprzednie zbiórki

109,653.46 zł (102.26%)
Półroczna rehabilitacja i sprzęt medyczny

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28.06.2019 - 12.05.2020

Półroczna rehabilitacja i sprzęt medyczny

6,401

109,653.46 zł

28.06.2019 - 12.05.2020

79,910 zł (16.13%)
Fizjoterapia i specjalistyczny sprzęt rehabilitacyjny

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Fizjoterapia i specjalistyczny sprzęt rehabilitacyjny

6,020

79,910 zł

12.05.2020 - 18.06.2020

Zobacz wszystkie poprzednie zbiórki

I am KSAWERY (Xavier) I am 2,5 year old boy, I live in Lisburn ( Northern Ireland) and I love to smile , but sometimes it is really hard, because my parents´ eyes are very often sad, even they try very hard to look happy... 


I have SMA – Spinal Muscular Atrophy type 2...


During the first 8 months of my life, I was really healthy boy, like in book, just like other healthy children, I played, raised hands, kept my head beautifully from 1 month of life, sat, began rolling.... I was suddenly fell ill with pneumonia and bronchitis. And since that day everything have collapsed ... I lost the ability to sit, I was stopped raising  my head,I stopped rolling over ...



From one day to another I got worst. Some day I was only lying about... my  body lost all muscles ... nothing went together ... the hands did not play as before as I had no strength to lift them ... the legs stopped moving ... I could not keep the sitting position ...I became limp ... I could not raise my head as before ... my chest collapsed and my tummy became a lot bigger...


From the day of the diagnosis February 7, 2019 as this date my parents will always  remembered and it cannot be erased - it was the worst day in theirs lives ... 
the live of parents ... who now have to face new challenges, have to hurry make two steps ahead of the illness, they have to think differently ... they have to fight for me  every day ... and all this is so theirs child could still live ... 
3 letters they heard that day that haunt my parents day and night - SMA - Spinal Muscular Atrophy .. Now they  are learning to live again ... without any plans .. just from day to day with me... it all suddenly started to concern theirs ... and theirs child too... from now on nothing is the same ... my parents are trying to give me a chance for a normal life...

Ksawery Rynkiewicz


Unfortunately, SMA does pick and choose ... have no mercy ... takes away what is the most valuable in my small body - muscles, as a consequence I becomes weak ... I loses all motor skills, I breathes weakly, begins to choke and I have trouble swallowing foods, you can never hear me like Iam crying, I can't cough ...  


This is SMA...


I needs specialised equipment for home ventilation that supports my breathing - a BIPAP respirator, a cough assist - which will help me learn how to cough,a suction machine - which helps removing some secretions from my mouth …

Ksawery Rynkiewicz


Only daily rehabilitation delays my muscles weakness processes.... 


My parents would do everything that they can... my Parents will do the impossible...


I was already received the first drug, which helps with the progression of the illness - there are 6 doses of this wonderful substance (nusinersen) that needs to fills me for action and for which my parents  fought so much and they are so happy that the first brought visible effects ..


I  begins to raise my arms bit higher and higher ... I  starts playing with my toys, I am able to move a bit my legs .. but in order for keep helping me and achieving visible effects I need to ask YOU for a help  ... 
 
I got a chance... ONLY ONE ..CHANCE... to save my live..   


 Gene Therapy...


In USA  is costs over 2 million dollars! You can read about this medicine.f This price makes this medicine the world’s most expensive treatment and not readily available to the ordinary people. 
The only condition is that the child must be less than 21 kilos so we do not have much time!
I have 16 kg already ...

Ksawery Rynkiewicz


Can you imagine the pain in my parents hearts knowing there is a medicine which can save my life but the price is just too high??? That is really heartbreaking...


Im fighting for my better life ... 


I have to ask YOU for help... Please do not scroll without any action, please help me to get this drug.. Its a hope... 


My further life depends on it..   Depends of  YOu...


PLEASE HELP ME.. 

I can't do it alone, there is no such possibility... I am to small...


This fundraising involves help for funding to get Gene Therapy ...


Please, be with me, look at me with YOUR gracious eyes.


I will be only 3 years old this November 2020...


Iam  suffered so much... My ill won't be downhill, but it may be a little easier in my future ... 


Please do not be afraid to help.. 


I NEED YOU IN MY LIFE..


You can observe our daily struggle with the disease on

www.facebook.com/smasherooo


We run a group of charity auctions for our Xavier, its worth to check this out

www.facebook.com/groups/licytujemydlaksawcia

Person verified by the Siepomaga Foundation
1,552,237 zł
Supported by 82,315 people
Donate Donate