Unique Lívia Needs Help

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Hi everybody!

My name is Lívia Roškaninová and I am very unique little girl. Even though I am just 15-month-old, I already have to fight for my life. This is because of my special condition called Canavan that is going to prevent me from living past age 10. Until recently, this condition was untreatable, but now with your help I can undergo a treatment in the US, which is my only chance for longer life. But let’s start at the beginning.

I saw the light of the world for the first time on March 13th 2019 in Snina hospital, Slovakia. I was born with amazing measurements - 4530 g and 55 cm and my mom says she lost her breath seeing how beautiful I was. Everything was all right after my arrival and I brought joy to my whole family. Surprisingly for infant, I was becoming so keen of sleep that my mom started worrying that something was wrong. Therefore, she decided we should go see a doctor and that is when everything changed. The first recommendations of health professionals brought us to a local rehabilitation center, where I had to deal with the methods of Vojta Therapy. My peers have already managed to keep their head high or even turn on their back in this period and I wanted to be like them. Well, as they say, without hard work nothing grows but weeds. When I was born, I did not undergo sonographic brain examinations, so I had to get it when I turned 5 months. "I have never seen such a brain in my life - either you find a diagnosis or unfortunately", the doctor said. My parents could not believe what they are hearing. Mom cried heartily, my dad was holding her hand, and they both felt as if someone had stabbed the sharpest dagger into their hearts. We waited a long time for the results of the urine examinations that we underwent until one day dad's phone rang with doctor’s diagnosis, "Canavan disease". I know you have probably never heard of this disease before. I am not surprised. It is such a rare disease worldwide. My parents look me in the eyes every day and tell me I am not sick - I am just unique. I am more precious than any diamond in this world! But you know what I do not really understand? Why I am supposed to be in this world just for 10 years. You know, I am just a little girl, but believe me, I have a huge heart. I love my family and they love me unconditionally. I wish to stay here with them forever, to love them, please them and put smile on everyone's face as I do every day.

Dear friends,

on behalf of us, the parents of our wonderful, 15-month-old Lívia, I sincerely thank you from bottom of my heart for every second you spent on reading our story. From her birth, Lívia has become the center of our universe and the meaning of our lives. Believe us, it costs us pain and many tears to write these lines. Lívia was born with no indication of any disease. She was a wholly healthy baby with Apgar-early 10/10, but the reality of today and the diagnosis of Canavan disease in the case of our daughter confirms how unpredictable life is. Life can be very difficult especially in such cases when you live not only for yourself, but first of all for the child you gave life to and which is worth everything possible and impossible in the world. And we want to fight.

Currently, there are approximately 2000 children suffering from Canavan disease in the world. Livia is one of the two children diagnosed with this disease in Slovakia. Our daughter still does not hold her head, does not spin or crawl. However, she is interested in toys, tries to take them in her hands, and eating does not give her any trouble either. Meanwhile, nobody knows when this insidious disease takes her slowly away, even the skills that she now masters without any problems.

Despite the available sources suggesting that there is no treatment, we are grateful that medicine and science are progressing rapidly and our daughter has a hope for life through gene therapy that can be done beyond our borders, namely in the US under the supervision of Dr. Paola Leone. In order for Lívia to undergo this therapy, we need $1,140,000. However, without generous donors, we will not be able to afford to pay for this therapy because it is not covered by Slovak insurance companies. So, without you, we have no chance. We urgently need your help. If you have decided to give us a helping hand and allow our Lívia to receive a gene therapy that can be a huge step forward for her, we thank you with all our hearts.

"We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop." (Mother Teresa)

Canavan disease is a rare inherited disorder that damages the ability of nerve cells (neurons) in the brain to send and receive messages. This disease is one of a group of genetic disorders called leukodystrophies. Leukodystrophies disrupt the growth or maintenance of the myelin sheath, which is the covering that protects nerves and promotes the efficient transmission of nerve impulses.

SOURCES FOR MORE INFORMATIONS

https://ghr.nlm.nih.gov/condition/canavan-disease

https://ghr.nlm.nih.gov/condition/canavan-disease#genes

http://www.canavan.org/effects-of-gene-therapy

https://aspatx.com/#top

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Organizer

Martina Januvka 
Organizer
Philadelphia, PA
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