27- year old Giga Gagnidze can say just a single word - “mama” and his 7- year old brother Luka still uses diapers. A severe form of epilepsy deprived the boys of joy and happiness of childhood and youth and their poor parents Eka and Gogita have no hope of ever being happy...
46-year old Eka used to dream about a simple and calm family life, about having children and grandchildren... But her dreams would never come true... She has not had a normal life since her 2-year old son lost consciousness, his skin turned blue and he forgot how to breathe. Giga’s severe epilepsy attack turned into a life-long nightmare...
After 19 years the long-suffering mother decided to make a new attempt and gave birth to her second child...Her only wish was - to have a healthy child! But the evil fate had its own plans - the youngster was diagnosed the same disease as his elder brother...And Gagnidze’s family faced the second circle of hell...
Eka, what happened to your sons?
- Both of my sons suffer a severe form of epilepsy, which affects their cognitive development...The elder, 27 -year old Giga, can only say a single word - “mama”. When he is unhappy with something, he starts shouting like a disobedient child: “Mama-mama-mama” ...and it’s impossible to make him calm down! In spite of looking adult Giga’s mental age is about a pre-school child’s level. You cannot leave him alone, because he can harm himself or his 7- year old brother....
Getting out with him is even more dangerous than staying at home... He is unable to walk without stumbling. I lead my elder son by hand while his coevals get married, work and live their own life...
The younger Luka still uses diapers, can’t hold his head up and is totally uncontrollable. Luka can’t sit still, he touches something all the time, breaks dishes, fights with the elder brother...When they dispute about something they start biting and scratching each other like wild beasts. And there is no way to stop them.
When I go out shopping, I always pray asking God not to let them kill each other... Luka likes to open the water tap and to watch the running water. I guess it’s about six times as he nearly flooded the apartment! Once when I came back after shopping, I found my younger son playing with glass splinters - he reached the glass jar and broke it. How could I be calm? He could have hurt himself bleeding before I came back.
It’s terrible...Are your children sick right from their birth?
- Giga’s ordeals began from his very birth. Birth pathology - umbilical cord entanglement almost caused my son’s asphyxia during the labor...He was born with his skin blue due to the shortage of oxygen and he did not cry like newborn babies do. From a very young age he started fighting for his place under the sun. The baby received mechanical ventilation for three days. He was unable to breathe by himself...It was a miracle that doctors managed to save his life...
When Giga was 2 years old, I noticed that he was not developing at all: he did not hold his head, he could not stand ... All the children of his age could already run confidently around the yard ... Doctors just shrugged their shoulders until Giga had a severe epileptic attack. He rolled his eyes, fell down and began to fight in seizures ... My son almost died in my arms ... The doctors gave a terrible verdict: a severe form of epilepsy, and as a result of it my son does not develop mentally. From his very birth till now I am his hands, his feet, his head. Poor Giga is unable to do anything by himself.
And what about younger, Luka?
- I gave birth to Luka hoping that he would take care about his brother when I pass away, but...-Eka was unable to continue and began crying...
Please, calm down...What happened to Luka?
- Upon learning of Gigi's diagnosis, I was again overwhelmed by thoughts of the future. My husband and I are will die one day - who will take care of our son after we pass away? God heard me. I became pregnant for the second time. And under the close supervision of doctors, I managed to carry and give birth to a healthy child. We were so happy! But Lord had his own plan...When Luka was 3 years old, he got pneumonia. High fever caused an attack.... Exactly the same as Giga had...A felt as if I was shot and now, I have to live with those bullets in my chest.
Life was too hard for me to bear.... I used to dream about simple human happiness, but now I am scared of any upcoming day...
What do the doctors say? Have you tried to treat your sons?
- Epilepsy is untreatable. But there are rehabilitation courses. Now it’s Luka’s turn to pass through everything that Giga has passed before.
We support their condition with anti-epileptic medications: Levetiracetam and Depakine Chrono 500. These medications help to avoid attacks but are not sedatives. Luka is uncontrollable, especially when he wakes up in a bad mood! He starts shouting and crying and throwing a tantrum...We have to visit a neurologist again, maybe he will prescribe some other medication to Luka. But it will be necessary to pass tons of tests beforehand, and we can hardly afford it financially...Otherwise it’s no use visiting.
- Does the state help with the treatment of boys?
- With Giga - yes, as he has official disability status, which I literally begged from state! But I have not registered Luka as disabled yet. I hope he still has a chance to avoid this terrible status.
And one more thing: for the preparation of documents Luka will have to undergo a medical examination and tests, and it costs money. Each brain scan costs 105 GEL and he has to undergo it regularly! I have been unable to have my son to take this scan for several months now... And it is obligatory! We should know the condition of his brain and his nerve endings.
We are on social welfare and Giga’s pension now...But that money is enough for nothing...And we cannot interrupt Luka’s rehabilitation! He is in a very hard condition but it’s still possible to help him! He’s still a little boy and it’s possible to save him...
- What is needed for that?
- We need a help of a very good speech therapist who would teach Luka to speak… At least a little...We also need back and foot massage, it’s so critical! There are special exercises, there are good specialists, but you need money for all that...I asked the state for help, but no response so far.
I am seriously sick as well, but I gave up on myself long ago...And my conscience doesn't allow me to go to the doctor, while I see my poor boys...
Woe is me since nothing can help to Giga...But maybe somehow, it’s possible to put Luka on his feet...I am appealing to you with this hope on my mind. Maybe I will find people who are able to understand the pain of the mother, who lost herself for her children.
What would you advise mothers, who are in a similar situation as you?
- Never lose hope! Despair is a great sin.
I often look out of the window, watching kids carelessly running in the yard and ask myself: why my child cannot do that?
And such thoughts make me sick...Don’t evoke God's anger or he will punish you! I accept my children as they are, realizing that I won’t be able to live without them as well as they won’t be able to live without me. My sons are my life, they are part of me! I’ll fight for their happiness until I’m alive.
- Where do you get the strength to endure the current situation?
- Faith in the Lord. He never sends ordeals to those who cannot overcome them. I am sure he protects my boys, helps them through good people...Hope that my sons will get better and they will manage to learn lots of things...I believe God will help them.
- Why did you decide to contact us?
A friend of mine addressed you once. You helped her a lot. After I heard her story, I thought maybe you might help me too? I know you help everybody in need. I can’t believe that my helpless boys do not deserve attention from kind people. I am sure Lord can see all the kindness and blesses people for it! I am so glad that you came, listened to me and shared my pain...You cannot speak to everyone so sincerely, you can't express everything that worries you...You gave me a hope that something might change in my life.
- It will change for sure! The fund has so many friends. Would you like to meet them?
- For sure, dear! Giga loves sitting in the yard and watching people. Actually, he is not able to join them due to his disease, but I see how thirsty is he for communication. Luka is the same...He can sit all day long near the window watching how children are playing in the yard. He throws them toys, calls them.... Probably he also wants to play with them, but he cannot...
We will be happy to see guests, to make new friends. Boys will be especially happy...
- Have you ever felt kindness from complete strangers?
- Actually not. But the room where we live was given to us by my mother-in-law, although I am not in a very good relationship with her. I feel she thinks I’m guilty of my children's condition...But the kindness has prevailed and my mother-in-low allowed us to live here...Our friends help us a lot...My husband is a furniture master...My relatives often give him some small jobs, so that he can earn some 20 gel. This is a small amount, but sometimes even that is very important.
- Can you tell us about your spouse in more detail? Where did you meet each other? How did your family “start”?
-Oh...- Eka looked embarrassed, - You will be surprised, but it was my mother-in-low who introduced us. Yes, the one who we do not communicate now! I met her in the same hospital room where the friend of mine was. I came to visit her and met my future mother-in-law, who did like me. I am very grateful to her that she introduced me to my future husband. My husband is a very responsible and conscientious person. Together we did overcome a lot. Lately he hasn't been lucky, since he was unable to find a good job, like majority of people nowadays. But he never gives up, he always looks for a side job and never declines any order. He is a very religious man, and often goes to church to pray for our boys...
And what did you dream about, what plans did you have when you and your husband were young? Before you knew about your son’s disease?
-Our dreams might seem very banal...We dreamed about building our own house, about rising up our sons, about holding grandchildren in our arms...And now, I can’t even imagine what happiness is... Thoughts of old age oppress me ...
- How can we help to your family?
- Please help my Luka get on his feet and become independent! I need nothing else! He is very capable, and he will handle everything, I am sure! If a speech therapist starts coming to our place, Luka will learn to speak and will stop mooing and screaming when something hurts him...Not always can I understand without words, what’s happening to him, why he gets fussy...Neurological rehabilitation course would help to calm him...Back and foot massage and special exercises would put Luka on his feet!
And God will bless all caring people. I have no idea how much it will cost, because good specialists charge astronomic amounts, which I don’t have. But, I believe that I poured out all the pain of my soul for a reason! Therefore, I pray in tears, share our pain ... Help us...
Mother of two sick boys does not lose hope that she can help her sons. Let’s prove to Eka that nothing is impossible. There are no someone else’s children. For the future of little Luka, who still has a chance for normal life, we should unite and help Luka’s family... Their mom won’t be able to stand all the problems of her sons alone. That’s why God sent them to us.
Luka needs a rehabilitation course by a speech therapist, treatment by a psychiatrist and neurologist and regular consultations with geneticist. Poor mother made first steps for her son’s rehabilitation but she’s unable to go on. It's a matter of money - finances which the family does not possess. Without our help the development of the boy will stop, as it happened with his elder brother. Give the little boy a chance not just to survive but to live!
Call the Gagnidze family, cheer them up and give them a hope for tomorrow. Phone: 558 24 90 45
You can also visit the family at the address: Tbilisi, Varketili district, massif 3, block 8, building 7, apartment 14.
Pease repost our publication. Let all your friends know about the challenges and dreams of the Gagnidze family! It’s extremely important!
God gives us chances to care about people who are unable to take care of themselves. Those poor people are sent to us by heaven, so that we could prove that we trust in God not by words, but in deeds!
Friends, there is one more request - if you know about the misfortune of a neighbor or friend do a godly deed, drop us an email at: email@example.com
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(purpose: Eka Gagnidze)
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We have already helped many disadvantaged people! Let’s support Eka and her sons, as no one is immune to bad luck! And who knows, maybe someday we ourselves will need help of strangers!
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