Ends at: 08 September 2021
Our son Jas is three months old and we are fighting for his life. He was diagnosed with deadly genetic disease. Please read emotional parental appeal and please help us safe this little boy.
In third month of Jas’s life our world fell apart into tiny pieces... On 26th May, Mother’s Day to be precise, we have received results of the genetic screening confirming SMA type 1. This disease means our child’s muscles are weakening!
We have started desperate race against the time! Hope for Jan is genetic therapy worth 9million Polish Zloty! We are begging for help! Every day is of the essence!
Jas was born 19th February 2021. At the hospital we noticed worrying signs: he was not moving as much as other new-borns, he wasn’t vigorously kicking his legs or lifting his arms. It looked like he did not have energy to perform any movements... Doctors were not worried, they were calming us down, dismissively saying that our son will “liven up” in time. We have heard that he simply is a very calm baby.
Soon after leaving the hospital, we have taken our son for paediatric assessment, who noticed low muscle tone. We then saw a physiotherapist. Our son’s condition was not improving. One day our physiotherapist noticed that Jas has contractures (tight muscles) around his legs. Our journey through doctors’ assessments began. Orthopaedist, another paediatrician, referral for general diagnosis…
At the beginning of May we landed in the hospital for detailed screening procedure. And that’s how step by step we finally got to the bottom of Jas’s condition. That’s when for the first time we have heard that Jas has got suspected SMA type 1. “Suspected” was the key word we were desperately holding onto until the last moments. We believed that genetic screening tests would rule out this deadly disease. Unfortunately, the results were clear…
Jas is suffering from SMA type 1. Spinal Muscular Atrophy is a very rare genetic disease. Due to genetic defect the neurons in the spinal cord are dying out. Genetic mutation destroys not only muscle strength responsible for movement but also the most important muscles responsible for breathing... This illness is a death sentence… Many children with SMA will be on life support machine in the very early stage of their lives. Just a few years ago, children like Jas were subjected to slow and painful death…
The results were devastating. We have been immediately referred for medical treatment, to distribute medication which slows down the progress of disease and has to be distributed through Jas’s lifetime. The medication is injected into spinal cord directly. This means immense suffering and pain! On top of that every day we are practising physical therapy with Jas but it still isn’t enough to stop the progress of the disease.
Modern medicine gives us chance to fully stop SMA type 1! This chance is a genetic therapy, the most expensive treatment in the world….
For the best results and prognosis Jas must be treated no later than when he is six months old, before the disease damages his little body completely! He would only have to have one genetic treatment in his life! Up until recently this treatment was available only in USA. Now it is also available in Poland. Unfortunately, the treatment is not funded, therefore we must pay more than 9million Polish Zloty.
We decided to move heaven and earth to safe Jas! It is a race against time because genetic treatment can be distributed up to maximum body weight of 13.5kilograms, it is too dangerous if any heavier.
Will we make it on time? This question is not letting us sleep. We would give up everything for Jas’s healthy life. We are not able to raise those funds ourselves. We believe in miracle. We believe we will find people who would be willing to help us. We cannot give up, not when our child’s life is at stake.
We are begging you from the bottom of our hearts, please help us safe our little son. Before it is to late…