We became aware of Spinal Muscular Atrophy (SMA) Type 1 in December 2020. It all began with the fundraising campaign for Metehan Fidan, a 1 year old infant that lived in Leicester, United Kingdom. He was diagnosed with SMA type 1 when he was only one month old, and the parents were informed that he would be lucky if he lived. This disease will significantly affect Metehan’s long term mobility and the level of independence he will be able to achieve and maintain.

SMA, Type 1 is a degenerative disease that progressively destroys motor neurons-nerve cells in the brain stem and spinal cord. These cells are essential in controlling skeletal muscle activity, such as speaking, walking, breathing, and swallowing. The degeneration of these cells also leads to muscle weakness and atrophy because the disruptions in the signals between motor neurons and muscles gradually weaken and begin wasting away.

Metehan’s family was informed that there was a treatment available for their child’s condition known as Zolgensma, which is approved by the FDA and has been approved in Europe.  The treatment consists of a one dose of Zolgensma which will then require long-term specialised after care treatment. Novartis is the company selling the Zolgensma medication and they are currently selling it for 2.1m USD.

The family were panic-stricken and devastated once they found out about their child’s condition and the cost of his treatment. However, they decided not to give up because if there is a treatment available with hope that their child could live and have a better quality of life, then they wanted to do all they can as parents to raise the required funds.

This is when the community in the UK, with the support of other countries, started doing live fundraisers on social media and raising funds for Metehan. Astonishingly enough, with the will of people and the community spirit, the community raised £1.3m pounds within a month. This clearly showed that everybody could help. It’s all about getting enough numbers involved.

After Metehan’s campaign ended, the volunteers were contacted by numerous other SMA type 1 children’s families, whom were also hoping to obtain this treatment for their child. At this point we couldn’t turn our backs on these families, as these children’s lives were dependant on this treatment but we knew we couldn’t carry this burden alone. Hence Metehan’s campaign inspired us and we knew that if we could all donate as little as £1 per week and if we could reach 2 million people, then we could enable a child that has been diagnosed with SMA type 1 to obtain this treatment every week.

Whether you decide to make a one-off donation or set up a reoccurring payment, we promise that the donation you make today will be used to enable one of the thousands of children awaiting the Zolgensma treatment, to obtain this treatment and live the life that they rightly deserve.
The donation you make today could help save a child’s life and bring so much joy to their families.