SMA -Weronika's desperate fight against time

Help for Weronika Zyrek

An urgent fundraising appeal for Weronika who has been diagnosed with SMA (Spinal Muscular Atrophy). The fight against time has never been so important for our little girl! Her diagnosis has come far too late, so, as parents we are terrified! Our daughter is 21 months old and weighs12.65 kilograms! She needs  gene theraphy with Zolgensma before she reaches 13.5kg. This drug is very expensive-£ 1.79 million and we are faced with finding the thousands of pounds that needs to be raised in such a short time, whilst other children with earlier diagnosis have much more time to get help. We appeal for your support to be able to get this medicine. A child can take this life saving drug upto 2 years of age, and this means that we have only 2 months left to start the treatment!

Her diagnosis has been such a shock to us. We had no knowledge that our only daughter was suffering from such a terrible disease that will be life changing if we don’t act now! We have lived for so many months believing that our daughter is just developing more slowly than is expected at her age and that there was no serious problem.

From her early months, even the slightest movement was a great effort for Weronika, sometimes even causing pain. Unfortunately, the NHS completely downplayed her difficulties. Despite an evidently delayed gross motor development we hadn't been suggested further tests or treatment. We were reassured that her motor skills would progress in time. In fact, they discouraged us from seeking further advice. Some specialists pointed Weronika's weight as the main issue or even suggested she was lazy.  Our concerns were ignored because our daughter was developing very well intellectually. As parents, we had our doubts and worries, but Weronika is our first child, so we did not have any comparison. Our daughter seemed to grow normally, but physically she was falling significantly behind her peers.

The ongoing pandemic had caused diagnosis and treatment outside of England difficult, as we could not leave UK. When, despite being 19 months old, Weronika did not have the strength to get up on her own, we decided to seek medical help elsewhere. The neurologist’s suspicion was unequivocal – SMA (spinal muscular atrophy). Two weeks later, test results confirmed this terrible disease. We are heartbroken by the delay and by this diagnosis.

Weronika is a very intelligent girl who, already at this stage, is aware of her illness.Our hearts break when she says: ‘WALK’ and pulls out her hands to us, and we cannot help her. For a parent, it is truly devastating. Weronika’s leg muscles are soweak that they are unable to support her to stand up.

We beg you to help us to raise money for her treatment! We plead for any amount you can spare for Weronika and are hugely grateful anything you donate.

From her desperate parents,

Karolina and Sebastian