Hi My name is Michelle base in UK as a Healthcare Assistant and I'm fundraising for my nephew Phoenix Gelo who is 5months old from the Philippines and was recently diagnose with a rare genetic condition called Spinal Mascular Atrophy (SMA) Type 1.

Let me talk about a little bit about my nephew. When he was born he looks like any other babies but as the time pass by we notice muscle weakness in his lower limbs and he also has no head control. When they lay him in his tummy, he struggle to lift or turn his head from side to side. With all this observation, my sister-in-law discussed her concern to Gelo's Pediatrician but they said it could be just a developmental delay and still early to diagnose. But as the days goes by, Gelo's condition didn't improve and they notice difference in his belly breathing, involuntary movement of tongue and poor head and leg movements. On his 4th monthly check up he was advise to undergo an urgent genetic testing for Spinal Mascular Atrophy. His blood was extracted and was sent abroad as this procedure is not available in the philippines, which cost them approximately Php 20,000.00 (£266). After a week of waiting, result came back and he was positive of SMA, result were quote as "Two Pathogenic variants identified in SMN1. SMN1 is associated with austosomal recessive spinal muscular atrophy. SMN2 copy number:2".

After learning his diagnosis, the Pediatric Neurologist gave them prescription of the drugs needed for Gelo. He was prescribed of Risdiplam (EVRYSDI) which is the only drug availble as of now in the philippines and needed to be taken for the rest of his life. This medication cost around Php 400,000.00 (£5,500) per bottle which he will only consume for 37days.

They tried to reach out to different organisation about SMA in the philippines and haven't heard back from them yet.

We are still open for other treatment plan if given a chance but for now we humbly ask for everyone's help to raise fund for his prescribed medication as it is urgently needed and will cost a large amount of money. I know this is just the beginning of his SMA Journey and there will be a lot more procedure to be done but for now it is very important that he gets this medication right away. All accumulated funds will be sent directly to his Parents which are both base in the Philippines.

A little help goes a long way. Thank you for everyone's support.