Help Axel Fight SMA

Dear all, we have been given privilege to help our dear friends, Sadikin Alfian and Jessliyn, who are desperately seeking help for the treatment of their baby, Axel, who is suffering from SMA.  Please hear out what Axel has to say, and if it touches your heart, as it does ours, it would mean the world for the parents to get any kinds of help from kind souls out there.

(As Axel's parents reside in Indonesia, they cannot create Gofundme page, and thereby we are managing it for them. But all of the communications (if you have comments, questions, or anything) will reach them, and for sure any kind of helps will be tremendously important for Axel to battle this life-threatening situation. If you are located in Indonesia, you can donate as well via KitaBisa ) 

A Letter from Axel

 

Hello world, my name is Axel. I was born on 18th January 2021. I am the first child in the family, so I got the privileged to get the most love out of my parents. Just like other babies of my age, everyday I grew bigger and stronger. Learning new tricks and moves every day. My favorites are smiling and laughing whenever people play with me. Daddy said that my smile and laugh always bring happiness and joy to people around me.

 

As I grew bigger, I tried hard to achieve all my development milestones that my daddy and mommy are excited about. However, I was a little bit behind to attain them. Mommy and daddy thought kid grew at different pace, so they didn’t worry too much back then. They helped me with exercise and give me the “Tummy Time” (which I hate the most). They cheered excitedly every time I raised my head high.

 

It was around 6 months when things started to go south. As usual, daddy and mommy put me on exercise, but this time I was not able to hold my head high anymore. It felt like the most tiring and difficult thing in the world. Mommy and daddy were concern with my progress, and quickly took me to see many doctors. They did many tests on me, took my blood, and put me on the x-ray. I was scared and cried a lot, but daddy said I was the bravest baby he has ever seen, because I cried only for a little. While waiting for all of the test results, daddy and mommy brought me to physiotherapist, to make sure that I can catch up with all the delayed milestones.

 

After all the waiting, the day of the truth came. The day that changed my life and whole family. It was September 2021 when I was diagnosed with Spinal Muscular Atrophy (SMA) type 1; which is a genetic disease that affects 1 in 10,000 babies. Mommy and daddy were left devastated worrying about my future.

 

Doctor told mommy and daddy that SMA is a progressive life-threatening disease that will slowly take away my muscle. Almost of 80% babies with type 1 SMA will not see the 2nd Birthday due to respiratory failure and 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 assistance such as respiratory and feeding tubes just to stay alive, wheelchair to get me moving, and braces just to be able to sit straight for the rest of my life.

 

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.

 

There is no cure for SMA. However, there is hope for me to get a better and near healthy future. An once life time gene-therapy called “Zolgensma” with a hefty price of USD$2.1million to give me a second chance of life and a better future. This gene-therapy has saved many of my friends with SMA. However, I can only receive this treatment before my 2nd Birthday. Seems like 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 to early, because I know they love me so much.

 

Thank you, Love Axel.

If you are based in Indonesia, you can also donate via KitaBisa 

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