Together for Miruna - Asociatia Noel

My princess, Miruna, needs $2.1 million for the world's most expensive treatment, Zolgensma. So far we raised $1.6 million and, together, we can fight to stop my daughter’s disease from deteriorating her body.

Zolgensma is the only approved genetic treatment on the market that stops the evolution of spinal muscular atrophy, a rare genetic disease that affects the muscles of the body until you cannot move. It is the only treatment that can replace the missing gene in my daughter’s body…

Miruna was born on the 7th of October 2016 and had symptoms of the disease since birth, but for a long time we didn't know she was ill. Baby Miruna was like a doll, sitting still wherever you put her... as if her body was too heavy for her to move. All the doctors who saw her during the first months of life told us that her development is slow, but not to worry because every child has their own pace.

When she turned 7 months old, after several neurological tests, one of the doctors raised the suspicion of SMA (spinal muscular atrophy). We waited 30 days for the genetic test result that would change our lives forever... On the day we received the diagnosis the doctor told us to consider having another baby. I didn't understand what he meant, I already have a child, she is the light of my eyes... did he mean that I should be giving up on my Miruna? I held my baby girl in my arms and, tears in my eyes, I headed home knowing nothing about what I should do to try and save my baby. It was so hard for me to say out loud that Miruna suffers from a deadly disease, that I couldn't even talk to my family about it.

Everywhere I looked I learned that children like Miruna go to Heaven by 18 months old. By that time, my baby girl was already 10 months old. I knocked on countless doors in Romania and abroad but no one seemed to know how to help us... doctors told me that there was no treatment available in Romania and that we should “stop wasting resources.”

All those days were a neverending nightmare because we could see how, right before our eyes, Miruna became weaker and weaker every day.

It wasn't until Miruna turned 1 year and 8 months old that we managed to get her a treatment that slows down the evolution of SMA1. She received it for the first time in Italy, because in Romania this treatment was still not available. Thus we managed to gain time for Miruna with us.

Miruna's body is very weak compared to a healthy child’s. Miruna doesn't have the power to get up from a lying position, she cannot raise a bottle of water, she can't lift her hands above her head, she doesn't crawl, she can’t hold a pen correctly in her hand because she doesn't have any strength in her fingers, her hands are curved inwards because her muscles are not fully functional.

Miruna cannot hold my hand.

She can't lift her head off the ground, she can't straighten her legs and she always keeps them bent from the knee, her soles slide outwards due to the lack of muscle power, her spine is deformed under her body weight, and the list of the damages caused by SMA1 can go on.

However, my Miruna is a very intelligent little girl, she is a fighter and works her muscles out daily in an attempt not lose any of the power she has left in her body. She is a wonderful child who wraps us up in her neverending love and who hopes that one day life will be good to her too.

I sincerely hope that we can give her this treatment and that our Miruna will be one of the children who regain their strength... and who enjoy their childhood.

Once Zolgensma stops SMA1 from evolving, Miruna will be able to work on regaining power and correcting the damage done by this cruel disease.

A lot of people joined us in our fight, but we need even more to succeed. We need to raise $2.1 million, to which hospitalization fees will be added for the administration of treatment. We already raised $1.6 million and, with the help of all of you who join us, we will succeed!

A donation as small as it may be brings us closer to Miruna’s treatment.

Follow our journey in the Facebook group ′′Uniti pentru Miruna SMA1′′ and on www.asociatianoel.ro.

Other donation methods:

PayPal: paypal.me/asociatiaNoel

WISE:

Account number: 9600 0015 0917 1181

Routing number: 084009519

Account holder: Asociatia Noel

Wire Transfer:

Account number: RO84BTRLUSDCRT0532233601

Swift/BIC: BTRLRO22

Bank Name: Banca Transilvania

Beneficiary: Asociatia Noel