family and a long-awaited child. For years, the baby's mother could not 10 get pregnant. The couple turned everywhere, and when they had completely given up, God gave them a son.
The baby is only 10 months old, and he has already fully described his suffering and pain. Timosha was operated on in the first day of his life, having been told that the baby had an intestinal obstruction and that he was born in a caul, but it turned out differently. On the second day, the child still hadn't pooped, the fever persisted, and the first operation was followed by a second and a third.
At the age of 3 months, Timofey was diagnosed with a terrible disease: Hirschsprung's disease, a total form of (the working intestine (only 40−50cm), affecting the entire colon and most of the small intestine. Ileostomy. «short bowel syndrome». Hypotrophy of 3 degrees.
The child spent about 9 months in hospitals. He was given injections to the point that he has no veins at all, and he can't manage without IVs. Timosha is barely gaining any weight. At his 10 months old, he weighs 5200 grams. He eats fully processed formula (complete hydrolysate) — Nutrilon Amino, its cost is 400 UAH, a can lasts for 3 days. Timosha eats every 2 hour, 70 ml, although his dose should already be 3 times higher. Due to short bowel syndrome, he simply can't digest more formula at all.
A baby with such a severe form of Hirschsprung's disease, in Odessa, survived for the first time, and doctors don't know what to do with him, and Timofey, together with his parents, continues to fight for his life every day.
Examinations and treatment in Kyiv and Moscow, unfortunately, did not produce positive results, nor were we able to adjust nutrition for the child to begin gaining weight. In order to perform the surgery, the child's body weight must be 8−10 kg.
Little Timofey's parents also sought consultation and assistance from clinics in Kharkiv, Lviv, and Dnipropetrovsk. At they verbally advised going to Germany, as treatment and surgery for such severe forms of Hirschsprung's disease in children with such a weight, which they had not had.
After corresponding with clinics in Israel and Germany, one of the German clinics expressed willingness to take on treatment and surgery for the child and issued an invoice for 120 000 euro, payable by 13 November 2013 of the year.
The parents of little Timofey are begging and asking all kind people to respond to their request to help raise funds for treatment and surgery for their son in Germany.
Here's what Timofey's mother wrote to us in her letter:
Your only hope is me, not pass by our troubles, we can't cope alone! After all, in this life, unfortunately, no one is insured against anything and doesn't know what will happen next. Not God forbid, but anyone could find themselves in my place. I need your help and support!
During the 10 months of fighting for the life of our long-awaited baby, we have spent all our savings. Family and loved ones provide maximum support and help, but this, unfortunately is not enough. A lot of money goes on the child's nutrition, care, and treatment.
Timosha's family will be grateful for any help provided, whether it be material, informational, or just prayers! Please don't pass by this little Angel, who has so much life in his eyes and who without your help may not have time for her life.
We, who love Timofey with all our hearts, ask you to help us in our difficult time. Don't remain indifferent. Help us with fundraising and spreading information!
We are grateful to everyone who supports us. A deep bow to everyone!
Timofey's mom reports:
7 October 2013
We've been home for 9 days, but I think we'll soon need to go and get a feeding tube inserted, as Timoshka has started to undereat. After being outside he eats readily, but at home — he doesn't finish his 70 million. Now he often has tummy aches, and neither Riabal nor Bobotik help.
Ukrliv — A liver medication, it didn't work for us. His stoma started leaking, his tummy hurt, and we had to stop taking it. His bowel movements continue to be a problem. — He's either leaking or not pooping for days. We're not gaining weight yet, but we're not losing any weight either, thank God! Timka is having trouble with his teeth; several are coming in at once, and he's severely lacking calcium. His gums are swollen and itchy, he's drooling, he's cranky, and he sleeps very poorly. He really wants to walk, but with his weight, it's very difficult for him. He's unsteady, his legs are shaky, and his vertebrae are still weak.
13 November 2013
Timoshka is already undergoing treatment in Germany, it's hard to believe it's true.
On the first day, they took swabs from his nose and throat, and a stool sample. Today, they inserted a urinary catheter to collect urine for 24 hours—it's a huge device that you have to wear with your child. They punctured his veins twice, tried to draw blood, but they didn't get enough, there are no veins at all, and they'll try again tomorrow. My son is exhausted; whoever comes in, he's in tears. The conditions are good, and so is his attitude. Now, thank God, he's fallen asleep. We're in quarantine; we're not allowed to leave the room until we're tested for bacteria. That's how things are for us. Thank you so much for your help and support, thank you for giving Timoshka a chance to live and strive for recovery! Thank God for sending us such wonderful and kind people! Good health to everyone, and may the Lord protect you and your children, the meaning of our lives. A deep bow and greetings from Timofeyka, who is starting to wake up!
16 November 2013
Timka is starting to get used to it little by little. He slept more than usual today, I thought because he was full! He's eating double the amount of formula and rice. The doctors are amazed how he lived without a long-term catheter and with such a small amount of formula. Where did he get the calories? They said the baby is developing, which made me very happy. They removed the urinary catheter that had been in place for two days. Timik is happy, and so is his mother. Urine has been collected for testing. Today, I gave Timofey a bath for the first time. He didn't like the bath, though, and cried a lot, thinking his mom was trying to drown him. I had to give him a quick shower, but I still think he's fresher. We're weighing his urine and stool regularly. Today, his tummy hurt a little less, but it still hurt.
21 November 2013
Hello, dear friends! I'd like to let you know that Timoshka has been on an IV drip for three days straight, nonstop. He's tired, wants to move, stomp his feet, go for walks outside, and now it's the same thing. Yesterday, we were supposed to do a gastroscopy with a biopsy and a colonoscopy. Timoshka wasn't given food for 11 hours, he was begging for it and was being cranky. In the end, they didn't do anything, explaining that there were urgent cases and rescheduled it for Wednesday. On Wednesday, they'll administer anesthesia and insert a long-term catheter, followed by a gastroscopy and colonoscopy. Timka had another blood draw, an electrocardiogram, and an ultrasound of his heart and blood vessels.
The ultrasound showed that the right side of his body is clotted and there's no proper blood flow, so a catheter can't be inserted there, so they'll insert it in the left side. The doctor said we can't do without a catheter. They'll leave it in place for at least a year, and then, as God wills, they'll monitor his condition. Blood and urine tests are fine, but there's a sodium and potassium deficiency, as usual. We've switched to a completely different diet; he doesn't enjoy it, but he has to. Although it's quite tasty compared to Nutrilon, it's just that his body got used to it over the past year and is having a hard time adjusting. Timka — is a fighter, he's trying so hard, God gives him strength, thank him for everything!!! He started smiling at the doctors and nurses; it's a very interesting age now. His flora is disturbed because he was given antibiotics at home for a year, and we'll be in quarantine.
24 November 2013
Greetings from Timofey, he's feeling well, thank God, — well. We're so happy. — Timka, for the second day now, has been given half a teaspoon of carrot puree and was allowed to try a banana. He's so happy, he can't put the spoon down, you have to see it. Then, he gets hysterical because it's not enough. We introduced two new formulas, but he's reluctant to eat them. I'm trying to get him used to it, and it's a real struggle. Yesterday and today we asked to be taken off the infusion pump and went for a walk, because he's been lying around for too long, getting nervous and pointing his hands outside. Thank God and the doctors, we're gaining weight!!! His stool is a bit loose, but I think it's because of the new formula. The main thing is that he doesn't have the pain he used to have. I don't even want to think about it. We've developed a runny nose and he's sneezing frequently. The doctor listened to him and said there's no wheezing, so I'm rinsing his nose with saline and inhaling.
28 November 2013
Yesterday and today were very difficult for Timka, but with God's help and the prayers of many people, these days have passed more or less normally. Timofey had a long-term catheter inserted, had a gastroscopy (everything is normal) and a colonoscopy. They took a sample of his colon for analysis, to check again before removing it. The tests will be done in Switzerland, and Professor Wessel said they should have an answer in 3 weeks. Presumably, — the end of January, beginning of February, will be the main operation to lengthen the intestines. At the same time, so that everything can be done in one go and under one anesthesia, the professor will close the stomas, and if Switzerland confirms that the entire colon is not functional, it will be removed.
30 November 2013
Timosha woke up from anesthesia yesterday evening, and the catheter on his arm was removed. Since his temperature rose to 39,8 and wasn't being brought down with Nurofen, he was given metronidazole and Novalgin intravenously. Vomiting continued after feedings, so he was switched to Eleotrans and Neocate 20 ml. Today, everything is stable, thank God. The medications seem to be working; his temperature has normalized, he's no longer vomiting, and he's eating. Today, at 3 hours, we were disconnected from the IV, but otherwise, we've been using it constantly. He's not eating well because... The IV is enough; they make a special solution for him, giving him exactly what he needs.
5 December 2013
Timofey is feeling fine, the swelling has gone down. Today, they also gave him a diuretic infusion, and he'll be on a metronidazole IV until Monday. His temperature 37,2 has improved, thank God! We had an ultrasound of his internal organs, and everything is normal. We're getting IVs for 17 hours a day,6-7 hours: I take him outside for a break, and he quickly falls asleep in the fresh air.
14 December 2013y
Good evening, friends! Greetings from Timofey and best wishes from me! I want to let you know that the histology results have arrived, the diagnosis has been confirmed, and unfortunately, our colon is not functional. If radical surgery is necessary, it will be completely removed; there's nothing we can do about it. Thank God, there's no fever yet. We've stopped the diuretics. Her appetite is poor, so we've decided to change the formula. Today and yesterday, we had blood tests, both from a finger and from a catheter, but the results aren't very good, and today we were given a break from the IV for only 3,5 an hour.
18 December 2013
We don't have much news, but it's good! There's no fever or swelling, but the infusion is still being adjusted based on timing, speed, and lab results. Today, for example, they gave us 6 hours off from the infusion, yesterday, 5 hours. So far, we've been bouncing between 4 hours off and 6 hours, but it takes time to fine-tune it, as every body is unique. His appetite isn't great, but the professor says that's normal, since he's full from the infusion. Thank goodness, he's gaining weight! Thank you so much for everything, for your help and support, for your faith and prayers, for your hope for a healthy future, for walking with us to the bitter end! Thank God for being there!
23 December 2013
Tima gained weight in a month, like he hadn't gained in a year at home. We've adjusted his diet, not just formula and jarred purees; we've already eaten fish three times! They draw blood from a catheter, and when they prick his finger, they have such a system that he doesn't cry either. It used to be very painful for him, because he has no veins. No matter how hard they tried, drawing blood was a challenge, and he's a poor thing, covered in punctures, crying and shaking. The professor said that we'll gain another 500 grams and then we'll be able to walk! Having gained weight, Timofey has learned to get up on his knees and stand up on his own. He's already walking around the ward, following the walls, tables, and anything else he can hold onto! His internal organs, thank God, are also fine! Thanks to all this, I needed to come here, and I send my heartfelt wishes every day. I wish you and your children good health and joy! Greetings from Timka to everyone, and a deep bow from our family! God bless you!
27 December 2013
Hello, dear friends! The infusion is still on 18 hours and a break — 6 hours. Thank God, there's no fever or swelling. The infusion rate is now — 17 ml per hour. We're gaining weight, which is great. Although, in recent days, he's been eating — rice formula and applesauce and banana puree; he doesn't want anything else, and I can't get him to eat anything else. His tummy hurts, and he realized it and refused to eat. I hope it's temporary. His stool is loose. He's in a good mood, he's feeling stronger, he wants to walk, he climbs everywhere, gets into mischief, and bumps into things. For Christmas, he got a book and a doggie, and now we fall asleep only with Tuzik in our arms, holding him close and kissing him. Timofey really loves the medical staff; he started calling one of the nurses "baba," but I tell him she's not your grandmother, but he still goes on about it. Yes, children forget everything quickly! We talked with the professor about the surgery, and they decided it couldn't be done in one stage. Unfortunately, there will have to be several surgeries; there's no other way to avoid losing Timofey. We talked to him about a bowel transplant, but he said that in 5-6 years, the intestines will be rejected, and of course, no one will do it. A small intestine lengthening surgery is still scheduled for mid-January. He doesn't recommend removing the colon, as they're developing a ganglion transplant using stem cells, and in 5-10 years, that will be possible.
It can always be removed, but it can't be brought back, but it's up to us to decide. He's a professor, one of the top five surgeons in the world, and he has more 80 intestinal lengthening surgeries under his belt; he knows best. I'll ask God to guide his hands and help him save Timofey and navigate this difficult path! That's how things are for us. Greetings from Timka and a deep bow from me! May God protect you and your children! Be healthy! Thank you for being with us, for supporting, helping, praying, and believing in Timka! This gives him the strength to keep going!
23 January 2014
Hello, dear ones. I want to share some very important news with you – yesterday, we had intestinal lengthening surgery. At 9-25 in the morning, Tima was already in the operating room, and at 19-00 the professor came out, and I was able to talk to him. This day seemed like an eternity to me, and it's good that it's already behind us! The surgery took a little over 7 hours, the rest of the time was preparation. — General and epidural anesthesia, placement of catheters in the legs and arms, etc. Another small intestinal biopsy was performed, which showed the absence of ganglia; a very large portion of the intestine was affected. Fortunately, absorption functions are preserved, and it was lengthened; now it's all about 1,40. Unfortunately, two stomas were created, as the final, functioning section of the intestine turned out to be without ganglia, and the one that was lengthened and attached also had no ganglia. There is a very high risk of obstruction, etc.
Overall, the surgery went well; there was no bleeding. After the surgery, we spent 24 hours in intensive care, as... His condition was very serious: fever — 40 and blood pressure 200, more 10 internal stitches, etc. It was a very difficult day and night for Timoshka, and it's not easy now either, but we're already in the ward. Of course, everyone is in tubes, probes, and under machines, but in the ward. His temperature has dropped, and his blood pressure has dropped. For some time, he can't stop eating or drinking; he's being fed only through IVs. Timoshka — is a great guy, he's really fighting hard, and I look up to him!
28 January 2014
Good evening, our dear friends! It's been 5 days since the surgery, and they've been very difficult for both Tim and me. Timofey is slowly recovering from such a difficult surgery: yesterday and today, he was already playing with toys, trying to tell me and the nurse something, and he's started smiling again, which is great! He's being anesthetized with an epidural catheter in his vertebrae. He's connected to a mini-device that delivers doses of noropine at regular intervals. It also administered mini-doses of opioid, which was stopped on Sunday. He's been receiving three infusions at once, and we're also receiving antibiotics and Novalgin.
He's been taking Eleotrans for three days now. Today, they administered a mixture of — 20 ml, but so far it's coming out through the tube. It takes time for his bowels to start working and for the stitches to heal, at least a little! He has an epidural catheter, which is scheduled to be removed on Wednesday. — He also has a urinary catheter and a machine monitoring his heart, blood pressure, and pulse. A tube has been inserted into one of his stomas, which is still in place. He experiences pain periodically, especially at night. We manage it by pressing the machine to release an additional dose of noropine. The machine only releases an additional dose. 1 once an hour, no more.
He tried to get up a couple of times and then lay down again, in tears. He tries to roll over, then lies back down, returning to his previous position on his back. Today, the weather outside is wonderful. — The sun was shining, like spring, and Timosha was crying and showing me all day that he wanted to go outside. I'm trying to explain to him, but so far he doesn't want to understand.
A huge thank you from a mother to everyone for your support, help, prayers, faith, and hope! Thank you for walking this path with Timosha, for loving him; it gives him strength and confidence! Thank God and you, friends, that he's alive, that he's started smiling and rejoicing again, no matter what! Greetings from him and a kiss. God bless you and your children! Be healthy!
.jpg)
