It’s so heartbreaking to know that our little one’s life expectancy is predicted only 1-2 years if he is not well-medicated.

Galeos suffers from Spinal Muscular Atrophy (SMA) type 1 which is the most severe form of SMA. Galeos is our first born son and now he is only a 1 year-old baby.

SMA causes Galeos to have very limited movement because the disease weakens his muscles, even his lungs fail to operate and have to rely on oxygen tubes or ventilators. He is also not able to swallow food and he will need a Nasogastric Tube every time he drinks milk.

The initial symptoms appeared in December 2022, Galeos struggled from breathing where there’s a lot of mucus in his throat so he couldn’t swallow.

His condition worsened in January when Galeos was 4 months old. The oxygen level dropped as he couldn’t breathe normally anymore and he spent 2 weeks in a PICU room in Batam Hospital with a ventilator attached.

Later, the doctor decided to perform Tracheostomy procedure on Galeos to help him breathe. Galeos must spend his 2 months in the PICU with the medical bill raised unavoidably.

However, our struggles are not over yet as Galeos has to fight every second of his life. He needs to consume various medicines and endure medical procedures.

The most effective medicine that he needs is Zologensma gene therapy which is available in the US and costs around USD 2.1 million.

For now, Galeos needs Risdiplam which costs around USD 10.000 for 30 days consumption and other medicines. All of this is an extremely expensive price that we could never afford.

We never give up on Galeos, though. We travel from Batam to hospital in Johor Bahru, Malaysia back and forth to provide Galeos the best treatment.

We wish Galeos will be given a miracle through his illness, so he can be healthy and strong enough to move his feet so he could walk.

Please donate generously to Galeos and we will be thankful for every kindness you do for supporting Galeos.

Sincerely,

Galeos’ parents