......Ksawery’s dreams.....
Donation protected
Ksawery developed propely till he was 8 months old......
unfortunately after this time he started going backwards....
Hes head until that age was always straight and high. He had started rolling and sitting well.
Then his small body starts to be weaker , doctors said ‚he’s Just a lazy boy’ .....
However.. He then lost his head control, his knee reflex, his muscle tone.... he stopped rolling or sitting....
We get physiotherapist, she referend
us to paediatrician....paediatrician admitted us to hospital to get some idea what was happening with our son! Lot of investigation, lot of new idea re
His health.... they didn’t know what happened as all blood results come backs with once answer - he’s healthy.... Doctors made decision about genetic tests... we agreed...
Chromosome test results comeback with great information- no changes, no missing and no extra... we all were v happy.
Unfortunately DNA genetic test came back and the horror to discover that he has SMA.— SPINAL MUSCULAR ATROPHY type 2......
Our hearts stops beating 7th of Ferbuary 2019 when he was diagnosed with SMA - muscle wasting rare genetic problem .....
KSAWERY is verry happy boy... he probably don’t know what is happen with his body.... right now... he needs physio each day. We have a private physiotherapist but this costs so much..... we have been trying much as possible to pay ourself... keep going.. as we saw effects after his sessions.... his hands starts to be strongest and legs starts moved a bit... small things but this all are miracles for us!
Our baby boy has swallow problem because of weak muscles. Dysphasia... He try his best with seating but he falls a lot.... and will only get floppier as low muscle tone named as Hypotonia....
Only SPINRAZA helps to slow down wasting muscle on his body... We have been fighting a lot to get access for this drug... UK SAID YES...
we r waiting for his first doses .... maybe not to long....
After it happened we needed physio each day triple action to get neurones work in his small body after drug.... we would like YOUR help!!
So PLEASE, PLEASE, PLEASE help our son back to normal life whatever means ,... maybe he can starts rolling again after drug, maybe he can starts crawling... maybe his sitting improved after... we r waiting day when he can be steps few steps.... we r fighting for all things to get better life for him....
that’s all happened after few doses of this miracle drug- SPINRAZA- as clinical tests in other children’s shows it all.... muscles starts works.... wasting comes slower.... some children’s had no symptoms of regressing. Only progress....
It’s a long and hard enough road for parents of kids with SMA....
but we never give up!
❤️ OUR LITTLE WARIOR ❤️
unfortunately after this time he started going backwards....
Hes head until that age was always straight and high. He had started rolling and sitting well.
Then his small body starts to be weaker , doctors said ‚he’s Just a lazy boy’ .....
However.. He then lost his head control, his knee reflex, his muscle tone.... he stopped rolling or sitting....
We get physiotherapist, she referend
us to paediatrician....paediatrician admitted us to hospital to get some idea what was happening with our son! Lot of investigation, lot of new idea re
His health.... they didn’t know what happened as all blood results come backs with once answer - he’s healthy.... Doctors made decision about genetic tests... we agreed...
Chromosome test results comeback with great information- no changes, no missing and no extra... we all were v happy.
Unfortunately DNA genetic test came back and the horror to discover that he has SMA.— SPINAL MUSCULAR ATROPHY type 2......
Our hearts stops beating 7th of Ferbuary 2019 when he was diagnosed with SMA - muscle wasting rare genetic problem .....
KSAWERY is verry happy boy... he probably don’t know what is happen with his body.... right now... he needs physio each day. We have a private physiotherapist but this costs so much..... we have been trying much as possible to pay ourself... keep going.. as we saw effects after his sessions.... his hands starts to be strongest and legs starts moved a bit... small things but this all are miracles for us!
Our baby boy has swallow problem because of weak muscles. Dysphasia... He try his best with seating but he falls a lot.... and will only get floppier as low muscle tone named as Hypotonia....
Only SPINRAZA helps to slow down wasting muscle on his body... We have been fighting a lot to get access for this drug... UK SAID YES...
we r waiting for his first doses .... maybe not to long....
After it happened we needed physio each day triple action to get neurones work in his small body after drug.... we would like YOUR help!!
So PLEASE, PLEASE, PLEASE help our son back to normal life whatever means ,... maybe he can starts rolling again after drug, maybe he can starts crawling... maybe his sitting improved after... we r waiting day when he can be steps few steps.... we r fighting for all things to get better life for him....
that’s all happened after few doses of this miracle drug- SPINRAZA- as clinical tests in other children’s shows it all.... muscles starts works.... wasting comes slower.... some children’s had no symptoms of regressing. Only progress....
It’s a long and hard enough road for parents of kids with SMA....
but we never give up!
❤️ OUR LITTLE WARIOR ❤️
Organizer
Marta Rynkiewicz
Organizer
