Hi everyone my name is Audrey Chen and I am from San Francisco, CA. My cousin Jessliyn and her husband, Sadikin Alfian recently found out that their first born is suffering from SMA type 1. This is a disease that causes muscle weakness, a weak cry, and breathing distress in new borns. These babies have increased risk of aspiration and failure to thrive. They are desperately seeking for help for the treatment of their baby, Axel. Please hear out what Axel has to say and if it touches your heart, as it does ours, it would mean the world if you donated towards the cause. All the money raised will be put towards treatment in Japan that they are hoping to begin in January, it will be transferred to a personal account and then wired to the hospital in Japan. They have already communicated with the hospital and are hoping that the once in a life time gene-therapy called “Zolgensma” will allow him to have a second chance. 

 

(Since Axel's parents reside in Indonesia, they cannot create a Gofundme page; therefore, I have decided to step forward and manage one for them.)

A Letter from Axel

Dear world, my name is Axel. I was born in January 2021. I am the first and only child in the family, and as any firstborn, I am lucky to get the most attention, toys, and love from my parents.

Like other children, I grew up normally. I like to smile and giggles, and learning new tricks on the first 5 months.

However, my growth was going south around my 6th months. Daddy & mommy started to notice that I was struggling to do my normal tricks especially when it comes to lifting up my head which I have mastered a long time ago.

Quickly they brought me to see many doctors, running tests on my blood, x-ray, nerve functions, and DNA. It was the scariest things of my life to go through ☹

After weeks of waiting for the results, the truth finally came. The day that entirely changed my life and family.

I was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. A rare genetic disease that affect 1:10,000 babies.

SMA is a progressive life-threatening disease that will slowly take away my muscle ability. Almost of 80% babies with type 1 SMA will not see the 2nd Birthday due to respiratory failure. Even if I luckily survived, I will grow up disabled because I will no longer have any muscles to support myself. I may need life time assistance such as respiratory and feeding tubes just to stay alive, wheelchair to go around, and braces just to be able to sit straight.

 

Doctor said SMA will not affect my cognitive ability, so I will remain bright, alert, bubbly little boy keen to learn and explore new things, and experience the world around me.

 

However, there is hope for me to get a better and healthy future. A once in a life time gene-therapy called “Zolgensma” with a hefty price tag of USD$2.1million. A big price that my parents have to pay to give me a second chance of normal life. This gene-therapy has saved many of my friends with SMA. However, I can only receive this treatment before my 2nd Birthday. Time is no longer in my favor.

 

I do not want to give up that easily yet. Every day I trained hard just to make sure that my muscle will not deteriorate at a faster rate. I cried everyday while training, it is exhausting, but I have to remain strong until I can get the treatment.

 

Dear good Samaritan, could you please help my mommy and daddy to spread my letter and donate to raise the funds needed for my treatment? There are many things that I still want to learn, dreams to chase, and the big world to experience. I also don’t want to leave mommy and daddy side too early, because I know they love me so much.

 

Thank you, Love Axel