Varvara Gapechkina - Spinal Muscular Atrophy Type 2
August 19, 2016 - Ukraine
While most of the children ask for new toys for holidays and birthdays, Varvara’s wish is to be able to walk, play with her pals and become an artist.
Varvara was born on 8/19/2016. She is an absolutely adorable little girl who is facing lifelong challenges due to the rare genetic condition called Spinal Muscular Atrophy Type 2, characterized by progressive muscular weakening and loss. This muscle wasting disease also affects the motor nerve cells in the spinal cord, taking away the ability to sit, walk, cough, swallow and breathe.
Varvara and her loving family live in Ukraine, where there is no established protocol for SMA support and treatment. This beautiful girl needs very costly special nutrition, physical therapy and orthopedic equipment that will substantially slow down progression of the disease.
Varvara is a bright little girl who deserves to have future. Her family was misplaced from their home in Luhansk due to the ongoing military conflict in the Eastern Ukraine. Varvara’s family is pulling all the resources to provide constant medical support for her. Varvara will be coming soon to the US for the Neurological Consultation at Suny Downstate Medical Center in New York.
Your tax deductible contribution will be used towards Varvara's medical expenses. Please also check with your employer if they could match your contribution. Most employers will!
Any contribution will be a huge support for little Varvara!
TOTAL RAISED: $3,669.70, NET: $3,620.25 (UPDATED 04.01.2019)
Date Name Donation Fee Net
2019 Jan 19 B.K. $0100.00 $0003.20 $0096.80 2019 Jan 22 S.R. $0025.00 $0001.03 $0023.97 2019 Jan 22 R.F. $0030.00 $0001.17 $0028.83 2019 Jan 23 A.L. $0050.00 $0001.75 $0048.25 2019 Jan 23 P.G. $0025.00 $0001.03 $0023.97 2019 Jan 23 R.C. $0010.00 $0000.59 $0009.41 2019 Jan 23 N.G. $0010.00 $0000.59 $0009.41 2019 Jan 23 C.T. $0100.00 $0003.20 $0096.80 2019 Jan 24 N.Z. $0100.00 $0003.20 $0096.80 2019 Jan 24 L.P. $0100.00 $0003.20 $0096.80 2019 Jan 24 M.A. $0200.00 $0006.10 $0193.90 2019 Jan 24 N.M. $0050.00 $0001.75 $0048.25 2019 Jan 25 M.H. $0036.00 $0001.34 $0034.66 2019 Jan 25 B.M. $0050.00 $0001.75 $0048.25 2019 Jan 25 K.M. $0018.00 $0000.82 $0017.18 2019 Jan 25 M.W. $0036.00 $0001.34 $0034.66 2019 Jan 25 E.W. $0036.00 $0001.34 $0034.66 2019 Jan 25 H.K. $0025.00 $0001.03 $0023.97 2019 Jan 25 A.H. $0050.00 $0001.75 $0048.25 2019 Jan 26 S $0010.00 $0000.59 $0009.41 2019 Jan 26 S.H. $0018.00 $0000.82 $0017.18 2019 Jan 26 D.R. $0100.00 $0003.20 $0096.80 2019 Jan 28 D.G. $0018.00 $0000.82 $0017.18 2019 Jan 28 O.O. $0025.00 $0001.03 $0023.97 2019 Jan 29 T.G. $0100.00 GiftMatch $0100.00 2019 Jan 29 C.S. $0018.00 $0000.82 $0017.18 2019 Feb 01 E.G. $0036.00 $0001.34 $0034.66 2019 Feb 02 H.H. $0054.00 $0001.87 $0052.13 2019 Feb 02 P.K. $0050.00 $0001.75 $0048.25 2019 Feb 03 M.S. $0025.00 $0001.03 $0023.97
Facebook Fundraiser O.K. $0932.00 Benevity 2019 Mar 19 $0987.70 Benevity 2019 Mar 25 $0245.00
Alexandra Shevchuk - Spina Bifida
September 4, 2009 - Ukraine
Please meet Alexandra (Sasha) Shevchuk! Sasha lives in Ukraine and is very ill, requiring extensive and life-saving surgery in Israeli hospital.
Sasha was born on September 4, 2009, and is now 7 years old. Every year of her life has been a battle for her health and life. Sasha was born with a birth defect, SPINA BIFIDA. Shortly after her birth, Sasha went through an operation of removing her hernia. Sasha spent 2 long and endless months in hospital when doctors told her mother that Sasha most likely would not be able to walk in the future. When Sasha was 11 months old, her mother Anna noticed that Sasha did not hold urine. Doctors in Kiev diagnosed her with neurological pelvic disorder, urinary and fecal incontinence.
Sasha’s mother Anna is taking care of her daughter on her own. Sasha’s father disappeared shortly after her birth. Anna is not giving up on her little girl. Due to congenital abnormalities of the spinal cord and urinary system disorder, Sasha also has bladder disorder which led to kidney failure. Sasha is also diagnosed with bilateral hydronephrosis, which is the enlargement of the area of the kidneys that collect urine.
The following are the conditions that Sasha has been diagnosed with:
Bilateral vesico-renal reflux
Chronic renal failure( chronic kidney disease)
Urinary and fecal incontinence
In spring of 2016, Sasha received consultation at an Israeli clinic regarding her condition. Ukrainian doctors are not interested or are not able to help Sasha. Per observation and diagnosis of Israeli doctors, Sasha will need numerous surgeries that will allow her to live a meaningful and fulfilling life, without diapers, catheters and threats to her life. Anna is desperate, the cost of the first surgery is $54,368!!! Sadly, this is an unrealistic sum of money for a single mother.
Above is a story of her sick daughter, who is a kind and angelic little girl from Ukraine, who was given no hope to grow and become a young lady, a mother and just a happy woman. We can help her and save her, please consider being a part of her battle for a fulfilling life!
Total raised: $3,028 .00, NET: $3,027.26 (updated 10.03.2018)
Date Name Donation Fee Net
2018 Sep 26 O.M. $0010.00 $0000.74 $0009.26
2018 Oct 03 FB $3,018 .00 $0000.00 $3,018 .00
ARINA CHABAN - Spinal Muscular Atrophy Type 3
IVAN LISITSYA - Ewing sacroma
July 26, 2001 - Ukraine
Ivan is a 16-y.o. boy from Ukraine who is fighting for his life. He is diagnosed with a relapse of Ewing sarcoma — an aggressive form of childhood bone cancer. To fight this extreme illness, Ivan has recently come with his father to the US and has been accepted into MD Anderson Texas University Cancer Center. Ivan’s doctors hope that after giving a preventive course of chemotherapy they can proceed with a clinical trial protocol based on a newly discovered drug. This could become Ivan’s only way of survival.
Many people in Ukraine and neighboring Russia strengthened their efforts to let Ivan come to the US for treatment. Some 500+ people made donations within just 3 months. Just an eloquent fact: there was not a single flower seen at the traditional First School Day celebration at Ivan’s school this year because ALL the students and teachers saved their flower money for sending to Ivan’s family.
Since the disease was first diagnosed 3 years ago, Ivan has already undergone some 14 rounds of chemotherapy, received a course of radiation and had surgery on his iliac bone. He is a strong son of strong parents and has been bravely enduring all adversities. Unfortunately, despite all efforts, in the summer of 2017 doctors stated a relapse of the disease. From this point on Ivan was facing a need for special treatment which he could not receive in his home country.
Please help Ivan fight for his life and donate in his support. It is the time now when Ivan is in real need.
Please note that since Ivan’s parents can’t register a GFM account under their name, they have asked a close friend of theirs, Mr. Eric Harbert, to be responsible for collection and onward transfer of all funds to the hospital.
More details including a description of Ivan's disease and details of his current treatment are available on Ivan's personal site at http://helpivanlisitsyn.org
Total raised: $4,315.00, NET: $4,272.05 (updated 08.08.2018)
Date Name Donation Fee Net
2017 Nov 22 I.K. $0100.00 $0003.20 $0096.80
2017 Nov 22 N.D. $0050.00 $0001.75 $0048.25
2017 Nov 23 B.A. $0050.00 $0001.75 $0048.25
2017 Nov 24 I.A. $0030.00 $0001.17 $0028.83
2017 Nov 25 A.S. $0100.00 $0003.20 $0096.80
2017 Nov 25 Y.S. $0050.00 $0001.75 $0048.25
2017 Nov 25 V.B. $0315.00 $0009.44 $0305.56
2017 Nov 25 A.M. $0010.00 $0000.59 $0009.41
2017 Nov 25 V.B. $0020.00 $0000.88 $0019.12
2017 Nov 27 E.P. $0080.00 $0002.62 $0077.38
2017 Dec 02 E.C. $0210.00 $0006.39 $0203.61
2017 Dec 07 RCF $3000.00 $0000.00 $3000.00
2018 Feb 22 M.F. $0050.00 $0001.75 $0048.25
2018 Apr 06 N.P. $0050.00 $0001.75 $0048.25
2018 Apr 23 E.G. $0075.00 $0002.48 $0072.52
2018 Apr 23 A.N. $0050.00 $0001.75 $0048.25
2018 Apr 28 L.K. $0075.00 $0002.48 $0072.52
Irina Moskalenko - Spinal Muscular Atrophy Type 1
KARINA VLASENKO - Spinal Muscular Atrophy Type 2
MARIYA URBANOVICH - Spinal Muscular Atrophy Type 1
June 03, 2016 - Russia
My name is Yekaterina. On 06.03.2015 I gave birth to twin girls: Masha and Alena. Our girls were long awaited children. During my pregnancy I felt just perfect, all the tests and ultrasounds were good. Girls were born healthy without any complications. During our regular appointment pediatrician administered Hepatitis B vaccine. After we got vaccinated we noticed that all Masha's movements were gone. We went to the hospital and were told that it's birth trauma. The doctor adviced us to take vitamins and do massage. There were no improvements for a few months. After that we were sent to genetic examination. Honestly, we have never heard about this disease. Moreover, we have never thought that this disease would ever touch us. And then we have been shocked when the doctor named the diagnosis, "spinal muscular atrophy", confirmed by molecular-genetic method. It is hard to believe even now. Masha is in more or less stable condition now. We are constantly engaged in exercising, massages, and swimming – we support her as much as we can. But doctors are not so optimistic about Masha's situation. All they say is that there is no treatment, and all we can do is to create nice and happy atmosphere around our little girl. Unfortunately, there is a lack of information about treatment, care and support of such kids. Masha is a smiling girl with a very meaningful look. She is trying very hard to move her arms and legs. We hope that our baby will recover and we kindly ask for your help because only together we can handle any problem.
MAKSIM TASKAYEV - Spinal Muscular Atrophy
August 17, 2012 - Russia
Maxim is a long-awaited first child. He was born on 08.17.2012. The delivery was very difficult, doctors used vacuum extraction and during the procedure they damaged Maxim’s head. The wound has healed within a few months. Therefore, doctors said that Maxim needs more practice and work than others. We made an effort and in three months he had learned to turn around, hold toys, and was developing appropriately. When Maxim was 4 months old, we noticed muscle weakness and we started to seek a doctor’s advice. Doctors blamed it all on the difficult birth and said that he will begin to move, but time was passing and we had no result. Then, we went to the local department of neurology. There, we did tests and doctors said that muscles were in perfect condition and that we should check his head. We did MRI, but there were no serious deviations found. After that, the doctor appointed a course of neurodynamic massage. During the massage, our baby was crying terribly, but for the first time we saw the result: Maxim tried to sit down. After two weeks, he got much worse. He was weak and could no longer even turn around. We were scared and shocked. We found information about a doctor in Moscow, Artemeva, and went to seek her advice. During the first check up, she suggested that it was SMA. We passed the genetic analysis and the terrible diagnosis was confirmed. At that time Maxim was 1.4 years. We were shocked. Our local neurologists said that there is no cure and the life span is very limited. It was a terrible time. But we began to learn to live with it. We met parents via the Internet who were fighting the same problems as we did and began to support our child. But the disease is insidious, and is still progressing. So far, Maxim has gone through two pneumonias, and for fear of contagious viruses, we limit his communication with other children. Currently, he needs a bipap and cough assist like other children with this diagnosis. But we do not have enough money to purchase it. We have a lot of expenses, such as massage, a variety of vitamins, and special food. It is hard to know that we can not provide an opportunity for communication for Maxim because of the fact that we are afraid that he will get pneumonia again. It is hard to live knowing that you do not have enough funds for such necessary care.
RUSLAN SHCHERBAKOV - Spinal Muscular Atrophy Type 1
ALEKSANDR SAMUS - Spinal Muscular Atrophy
Sofia KvasNiuk - NEOROBLASTOMA
Sofia Kvasniuk DOB 01 April 2014. May 2017 she started to have bruises around her eyes, for a long time doctors couldn't diagnose her. And finally lumbar puncture showed 4th stage of neuroblastoma with metastasis. Unfortunately there is no help for Sofia in Ukraine. The family is asking for your help in raising funds for Sofia's treatment.
Total raised: $1,553.20, NET: $1,505.49 (updated 05.09.2018)
Date Name Donation Fee Net
2018 Apr 20 M.K. $0050.00 $0001.75 $0048.25
2018 Apr 20 I.S. $0020.00 $0000.88 $0019.12
2018 Apr 20 O.I. $0020.00 $0000.88 $0019.12
2018 Apr 20 A.T. $0025.00 $0001.03 $0023.97
2018 Apr 20 D.B. $0030.00 $0001.17 $0028.83
2018 Apr 20 IDS $0020.00 $0000.88 $0019.12
2018 Apr 20 IBF $0030.00 $0001.17 $0028.83
2018 Apr 21 K.B. $0100.00 $0003.20 $0096.80
2018 Apr 21 T.R. $0030.00 $0001.17 $0028.83
2018 Apr 21 N.P. $0010.00 $0000.59 $0009.41
2018 Apr 23 G.G. $0020.00 $0000.88 $0019.12
2018 Apr 24 K.S. $0010.00 $0000.59 $0009.41
2018 Apr 24 A.N. $0050.00 $0001.75 $0048.25
2018 Apr 25 V.P. $0010.00 $0000.59 $0009.41
2018 Apr 29 S.G. $0010.00 $0000.74 $0009.26
2018 Apr 30 G.R. $0010.00 $0000.59 $0009.41
2018 Apr 30 M.R. $0080.00 $0002.62 $0077.38
2018 May 01 F.K. $0050.00 $0001.75 $0048.25
2018 May 01 O.K. $0025.00 $0001.03 $0023.97
2018 May 02 I.B. $0025.00 $0001.03 $0023.97
2018 May 03 L.W. $0025.00 $0001.03 $0023.97
2018 May 03 A.L. $0020.00 $0000.88 $0019.12
2018 May 03 M.M. $0020.00 $0000.88 $0019.12
2018 May 03 M.S. $0022.20 $0001.28 $0020.92
2018 May 03 M.S. $0030.00 $0001.17 $0028.83
2018 May 03 M.K. $0030.00 $0001.17 $0028.83
2018 May 03 A.N. $0050.00 $0001.75 $0048.25
2018 May 03 M.R. $0100.00 $0004.70 $0095.30
2018 May 04 A.S. $0020.00 $0001.18 $0018.82
2018 May 04 K.S. $0010.00 $0000.59 $0009.41
2018 May 04 J.S. $0010.00 $0000.59 $0009.41
2018 May 04 I.S. $0010.00 $0000.59 $0009.41
2018 May 04 D.I. $0030.00 $0001.17 $0028.83
2018 May 04 M.M. $0060.00 $0002.94 $0057.06
2018 May 04 I.T. $0050.00 $0001.75 $0048.25
2018 May 04 A.P. $0075.00 $0002.48 $0072.52
2018 May 04 K.I. $0050.00 $0001.75 $0048.25
2018 May 04 D.V. $0020.00 $0001.18 $0018.82
2018 May 05 A.P. $0036.00 $0001.34 $0034.66
2018 May 09 Facebook Fundraiser $0260.00
STEFAN KLEMENCHUK - Spinal Muscular Atrophy TYPE 1
What should be the day of the most sweet and positive boy – our Stepan? In his beautiful and smart eyes the whole world seems to be not a fun place to be – his world consists of the white and cold walls, the noise of machines, everything is gray and dull. But it could change, Stepan might come back home... From the very beginning of his life the hospital became Stepan’s second home... that was the cruel life trick for our little son, to have his first breath under threat, the artificial lung ventilation (AVL) escorted him from the first day. In one moment it seemed that after three months in ICU life began to improve. Unfortunately, our happiness was replaced with our son’s extreme weakness, dyspnea and again at ICU with AVL, and this time we’ve received our son’s diagnosis of SMA Type I (Spinal Muscular Atrophy) and the ground slipped out from our feet ... My husband and I were full of regrets, what should we do? Whom to ask for help? Our little Stepan cannot breathe on his own... he already was breathing through tracheostomy connected to an AVL... very scary to see my son like this, it hurts from deep down inside, I pray to have an AVL to bring our son home with us, to raise him in love and proper care by loving parents, there are so many words we didn’t have a chance to tell him, so much love we didn’t have a chance to show because we can’t stay with him at ICU.