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What is it like to know that your child’s time is limited? And even if he doesn’t pass away before the age of two, he will never fully recover, and he will never be able to walk? To keep Dima alive, it takes just a little – our help!
Doctors have already done their part – they have diagnosed and prescribed treatment, but sustaining the child’s life comes at a high cost for his mother. Dima has a stoma in his throat that he breathes through, requiring regular cleaning. Unfortunately, his mother can’t afford to buy new sterile tubes, so she has to reuse old ones multiple times. This poses a significant risk to Dima’s weakened immune system.
“When I received my son’s diagnosis, it felt as if the ground had been ripped from beneath me. It was like being drenched in icy water! I felt so physically unwell that the doctors had to help me regain my composure. Spinal muscular atrophy type 1 – I was already aware of it… it was the most devastating news for my dear Dima.”
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What is it like to know that your child’s time is limited? And even if he doesn’t pass away before the age of two, he will never fully recover, and he will never be able to walk? To keep Dima alive, it takes just a little – our help!
Doctors have already done their part – they have diagnosed and prescribed treatment, but sustaining the child’s life comes at a high cost for his mother. Dima has a stoma in his throat that he breathes through, requiring regular cleaning. Unfortunately, his mother can’t afford to buy new sterile tubes, so she has to reuse old ones multiple times. This poses a significant risk to Dima’s weakened immune system.
“When I received my son’s diagnosis, it felt as if the ground had been ripped from beneath me. It was like being drenched in icy water! I felt so physically unwell that the doctors had to help me regain my composure. Spinal muscular atrophy type 1 – I was already aware of it… it was the most devastating news for my dear Dima.”
“What can be more harrowing than realizing that your son’s days are limited?”
– Shorena, I can’t even imagine what you had to go through. Why did you “know” it was a bad diagnosis? Have you encountered this before?
Shorena: No! Dima is my third child. He’s now 6 months old, and for four of those months, we’ve been in intensive care units and hospitals. Barbare and Anastasia are healthy girls; by God’s grace, they don’t suffer from this terrible disease – although there’s a high chance they could have inherited it too. When Dima was born, he was healthy as well. The doctors didn’t notice anything. But I felt that his movements were different from those of my daughters. The pediatrician said that children develop differently, and I was worrying for no reason.
– But a mother’s intuition was right, wasn’t it?
Shorena: Yes, my concerns turned out to be real. On May 24, when Dima was one month old, he began breathing strangely and stopped moving. The ambulance took him to a clinic in Batumi, and from there, he was brought to Tbilisi by the “Disaster Response Teams” special vehicle. A doctor examined him, and I overheard him saying, “It looks like spinal muscular atrophy.” He told me that we needed to send the tests to Germany to understand what was happening with my son.
“Those 5 weeks felt like an eternity. And the test result was Spinal Muscular Atrophy Type I – the thing I feared the most”
– Did you have to wait for the answer for long?
Shorena: For 5 weeks! It felt like an eternity. I read everything about this cursed disease on the internet. I learned that children with this diagnosis don’t live long. There are different types, and the first one is the most terrifying. Children don’t make it to two years… I don’t know how I survived that. I was out of my mind with grief. I even felt anger towards God, asking Him why He chose my son for such suffering. What did we do to deserve this punishment? We’ve never harmed anyone and always lived by His commandments. But then, while in the clinic, I saw how other children were suffering, and I realized that my son was relatively “lucky.” Perhaps it sounds strange, but he doesn’t experience severe pain, and he’s responsive. Some children with this disease have complications, and never regain consciousness. They don’t react to their mother’s voice and don’t even open their eyes. I can only imagine what these mothers are going through! Oh God, grant us patience.
“What comforts me is that Dima is developing well. He understands everything, engages, and smiles very often”
– What did the doctors say about why the baby got sick?
Shorena: It’s a genetic disease. Very rare. For a child to get sick, both parents must be carriers of this gene. God saved our girls, they are healthy, but the disease did not spare Dima.
“We have to live far from home because clinics in Batumi do not have specialists like those in Tbilisi”
– Oh, dear! So fate brought you and your husband together!
Shorena: Yes, we met by chance at a relative’s birthday. We dated for a year and then got married. We have a very happy family. We love each other very much. And this tragedy has brought us even closer. Right now, my husband is with the children in Batumi. His mother is helping a lot in raising them – may God grant her good health, she’s a wonderful woman. And I’m here alone with Dima.
“Climate in Batumi is deadly for Dima! The humidity can make his stoma, which is in his throat, fester”
– Why are you in Tbilisi?
Shorena: The clinics in Batumi don’t have such specialists as here. The disease is rare, and not everyone can handle it. And Batumi’s climate is deadly for Dima! He has a stoma in his throat, and it collects mucus. I constantly clean it. The tubes are very expensive, and we just can’t afford to buy them. Through the tube inserted in his nose, Dima eats. I inject food directly into his stomach with a syringe. I communicate with the girls through video calls. Anastasia understands that I need to be with Dima, but Barbara is upset with me. She doesn’t even greet me. She says, “Get rid of him and come to me.” I miss them so much too. But what can I do? It’s the only thing we can do. I miss my family a lot. But right now, I’m only Dima’s mom.
– How is the baby’s condition now?
Shorena: As soon as the diagnosis was confirmed, they prescribed medication for him. We’ve been taking it for just a month, and the effect is very good. He started moving his hands, being more active. He’s in a good mood. But all his bones are deformed. His chest, ribs, and legs started bending. Doctors say that with massages, we can help, and I’m actively learning everything that can help him. If you can support me, I will follow all the doctors’ prescriptions – they give me hope and say that although the little one may not fully recover, he will live!
– What is the name of the medication? And how much does it cost?
Shorena: It’s a new medication. It costs a significant amount – 14,000 for a monthly course, but thankfully, the state funds it. In our small Georgia, there are about 100 children with this genetic disease. If it weren’t for the funding, all the children would be doomed. None of them would survive even up to two years. But now, there is a huge chance for them to survive. I hope that a miracle will happen, maybe my son will overcome this threshold. I know he won’t recover, but perhaps this medication can support his life.
“Look at how handsome Dima is! How he rejoices with every touch and his mom’s words. The treatment is bearing fruit, and now he has even started moving his hands”
– Shorena, you addressed our Fund for assistance. How can we support you?
Shorena: Caring for a sick child requires substantial financial resources. We can’t survive on my husband’s salary alone. I have to pay rent, and every day, I need to clean the stoma. We need tubing for sanitation, hygiene products, diapers, specialized nutrition – these are substantial expenses. Every day, I take a risk by cleaning the stoma with already-used tubes. We were desperate, and then you came along, like a blessing from the heavens. My little boy urgently needs a mucus suction device; it’s the primary concern for children with a throat stoma. We simply can’t afford it on our income.
“I smile to you, and I want to live”
In order for Dima to live and make his mom happy with his smiles, we must help him. We need to help Dima breathe and provide him with all the necessary items. For both Dima and his mom, every minute is precious because their time together might be limited. To extend Dima’s life, they need a suction machine and sanitation tubing, hygiene products, sterile bandages, and gloves.
We won’t even ask you to imagine yourself in Shorena’s shoes, as just a moment in her situation can weigh heavily on your day. May God bless you and your children. May they be healthy and never experience more serious illnesses than a common cold. But please remember that not all mothers have this grace. Not all mothers can have healthy children. So, let’s unite and help. Unfortunately, we cannot cure their children, but believe me, the support they feel in this unequal battle with the disease means a lot!
If you want to get in touch with Shorena, please contact our Fund, and we will provide you with her phone number.
We are sure that all together we will manage to save them from imminent death.
Please don’t forget to repost our story. Let your friends know about the grief of this family! It’s extremely important!
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: office-fsp@fsp.ge
–In Bank of Georgia GE64BG0000000470458000
– In TBC Bank GE15TB7194336080100003;
– In Liberty Bank GE42LB0115113036665000;
You can also transfer money from our website: TBC Bank (GeoPay), Bank of Georgia (e-commerce), Liberty Bank (PayGe), PayPal
It is also possible to transfer money from TBCpay, ExpressPay and PayBox (OPPA) terminals. Find our Fund under “Charity” section (you can read more about rights and responsibilities of the Fund following the link https://goo.gl/GY2Gus).
We have already helped thousands of disadvantaged people! Let’s support this family too! And who knows, maybe someday we ourselves will need the help of strangers! Life is always unpredictable!
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11277.84₾Left:
16643.19₾