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

Fighting with some consequences of this disease as SMA is a constant race against time and an neverending story. We have just gathered a full quote for Xavier's rehabilitation for year 2019, and today's we are starting again with a new one.... Because this is our life... This is not a broken leg or appendicitis surgery treatment.... The end of the fight for fitness of our son will never stop ...

Here is our story:

Xavier's development up to the 8th month of life was like in book, just like other healthy children, he played, raised his hands, kept his head beautifully from 1 month of life, sat, began rolling.... He suddenly fell ill with pneumonia and bronchitis. And since that day everything have collapsed ... he lost the ability to sit, he stopped raising his head, he stopped rolling over ... From one day to another he got worst. He was only lying about... his body lost all his muscles ... nothing went together ... the hands did not play as before as he had no strength to lift them ... the legs stopped moving ... he could not keep the sitting position ... he became limp ... he could not raise his head ... his chest collapsed and his tummy became a lot bigger...

From the day of the diagnosis February 7, 2019 as this date will always be remembered and it cannot be erased - it was the worst day in our 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 every day ... and all this is so theirs child could still live ... 3 letters we heard that day that haunt us day and night - SMA - Spinal Muscular Atrophy .. Now we are learning to live again ... without any plans .. just from day to day ... it all suddenly started to concern us ... and our child ... from now on nothing is the same ... we are trying to give him a chance for a normal life ...

Unfortunately, SMA does pick and choose ... have no mercy ... takes away what is the most valuable - muscles, as a consequence child becomes weak ... loses all motor skills, breathes weakly, begins to choke and have trouble swallowing foods, you can never hear him crying, he can't cough ... He needs specialised equipment for home ventilation that supports his breathing - a BIPAP respirator, a cough assist - which will help him learn how to cough,a suction machine - which helps removing his secretions from the mouth ... Only daily rehabilitation delays muscles weakness processes. Our physiotherapy sessions are so important but even they are also slowly starting to exceed our budget ...we can't do it alone... it's unreal ... but as you imagine, we as parents would everything that we can... Parents will do the impossible ...

Xavier has already received the first drug, which helps with the progression of the illness - there are 6 doses of this wonderful substance that needs to fills him for action and for which we fought so much, the cost of one dose is about £90,000 and it became impossible to make it possible. In June 2019- NHS accepted reimbursement of fees, the first drug was approved for the treatment for people with the Spinal Muscular Atrophy and is already within reach and most importantly it is already reimbursed .. We are waiting for more– he will become stronger after dosing him by drug .. We are so happy that the first brought visible effects ..

Xavier begins to raise his arms higher and higher ... he starts playing with his toys, he’s able to move his legs .. but in order for keep helping him and achieving visible effects we need to ask YOU for a help for our child ... We need a rehabilitation every day and possibly twice a day ... we would be lost without the treatments ... as much as we tried, we were left with the only option of using private professional sessions which are very expensive and out of our pocket.

Like any parents we are fighting for a better life for our child ... I have to ask for help, it depends on Xavier's life... We can't do it alone, there is no such possibility... This fundraising involves 2 years of rehabilitation and purchase of specialized equipment called INNOWALK... Please, be with us, look at my son with gracious eyes. He won't be three years old until November 2020 and he has suffered so much... It won't be downhill, but it may be a little easier ...

Martha – Xavier's mum

You can observe our daily struggle with the disease on

www.facebook.com/smasherooo (opens a new tab)

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

www.facebook.com/groups/licytujemydlaksawcia (opens a new tab)