Amelia, a courageous young student fundraising to save lives!

Exeter teenager Amelia Kwiecinska who is battling a debilitating genetic condition which has left her unable to walk, is campaigning to raise awareness of the disease.

Amelia, 16, who is a student at St Luke’s Church of England School, which is part of the Ted Wragg Trust, was diagnosed with Spinal Muscular Atrophy (SMA) when she was around 12 months old. 

SMA is a condition that affects the motor neurons – the cells in the spinal cord – making muscles weaker and causing problems with movement, breathing and swallowing. Sadly, Amelia has lost her ability to walk permanently and has other complications due to SMA.

Despite this, she is campaigning to help others and is holding events at her school in an attempt to reach her fundraising target of £1,000. 

Amelia said: “As well as raising funds I want to raise awareness of the importance of screening. When my younger sister Lena was born she was screened and when the results showed she had the same genetic code responsible for SMA she was able to receive a new gene therapy, Zolgensma which combats the SMA before symptoms show.” 

The treatment for Amelia’s sister has been hugely successful and pre-screening more families would offer others the opportunity to live-symptom free from SMA.  

Amelia started to show symptoms of SMA when her parents noticed she wasn’t walking properly when she was around 12 months old, and from then on become weaker and weaker.  

When SMA develops in babies and toddlers, it can significantly reduce life expectancy. However, a team from Great Ormond Street Hospital (GOSH) and the UCL GOS Institute of Child Health (ICH) have shown how ‘blood spot’ testing new-borns could identify children who will go on to develop Spinal Muscular Atrophy, (SMA). 

Whilst Amelia was Lena’s saviour, the gene therapy, Zolgensma has a reported price of £1.79 million and is labelled the most expensive drug in the world. However, NHS England have been able to strike a deal to ensure it is available to patients at a price that is fair to taxpayers. *   

With the help of her school, Amelia is currently fundraising to help those affected by SMA and is on a mission to raise £1,000. In the last week of spring term there will be a non-school uniform day, mindful moments that week will be centred around SMA linked to the school values of taking responsibility and being inclusive. Amelia will be putting information together and conducting a school assembly.  

Kealey Sherwood, Headteacher from St Luke’s Church of England School, said: Amelia is an inspirational young lady who is absolutely committed to making a difference to others through her campaigning and fundraising. I have no doubt that, with the support of our school and wider community, Amelia will surpass her fundraising target whilst also raising awareness of SMA. We wish her all the very best with her endeavours and are really proud of her inspirational work.

If you would like to support Amelia’s fundraising campaign you can donate to her Just Giving Page Amelia Kwiecinska. If you would like to know more about SMA you can find all the information at Spinal Muscular Atrophy UK