Maria is our third and wanted child. She was born after a full-term pregnancy but when she was one month old we learned that she suffered from a double cardiac defect. She really had trouble gaining weight. We had to buy special baby formula food since she refused the breast at one month. We didn’t learn about the cause of this refusal until months later.

By the time she was three, one of her heart defects disappeared on its own, leaving her with just the open arterial duct defect which got successfully treated surgically. As it turned out, this wasn’t the only test that befell our family and our daughter. At three, Masha’s speech development was not even near where her siblings’ had been at her age. For a long time, our visits to various best doctors in our city and undergoing tests weren’t producing any results: we couldn’t get her diagnosed properly.

Masha is five now. We learned that Masha’s newly discovered diagnosis of velopharyngeal insufficiency is curable and that there are excellent doctors in Moscow who can treat her. We really hope that we can help her improve her speech and that she will get to attend a regular school and live a long and happy life.

Hi! My name is Sophia. Our son Kostya we had so eagerly waited for was born on November 4, 2020. Soon after his birth, he was diagnosed with “congenital complete sinistral cheiloschisis, combination alveolar and soft and hard palate cleft”.

Kostya is our first-born. He’s growing and developing like any other normal child, being fed breastmilk from a bottle. However, his defect prevents him from being properly nourished and he requires special care.

Our boy is growing very strong. He’s attempting to smile although he’s not been very successful at this so far. We really want our Kostya to be able to meet every new day with a smile and enjoy life.

Our baby is in need of a series of complex and expensive surgeries with subsequent long-term rehabilitation. We hope that there are people out there who can help us deal with our tough circumstances.

The story of this “Thumbelina” began three years ago when she was diagnosed with “cleft hard and soft palate”. The principal question we had to find an answer to was how to feed our daughter since she couldn’t be breastfed on advice of our pediatric therapist who was afraid the child would choke with breastmilk. A search for specialized bottle teats ensued. This took time and the baby grew hungrier. Although she was born very tiny weighing only 2520 g, she had an excellent appetite. So, our number one challenge was to keep her from dying of hunger and malnutrition. Every feeding session was agonizingly difficult despite the custom-made teats. Once the problem was finally under control, I started my search for a clinic that would agree to operate my daughter as quickly as possible.

Our local hospital kept putting things off citing the need to get an approval from regional authorities. The logjam was finally broken when our girl turned 11 months old and was already attempting to speak, but we’ve lost the precious time and it was too late to count on a hospital quota. Soon afterwards, we contacted Gennady Vassilyevich Gonchakov who agreed to perform the needed surgery.

Following her first soft palate surgery, Nika got even more prolific with the new words she could say, and after the second surgery on the hard palate her speech became more complex and expressive. Unfortunately, the surgery still left a hole the size just a bit bigger than a matchhead in her hard palate. She now attends kindergarten and takes immense pleasure in talking to her peers there. However, her speech continues to bear the signs of the impediment that is produced by a condition like hers. We really want to see her treatment through to the end to get rid of the post-surgery defect and go through rehabilitative therapy to get rid of any signs of the exasperating disorder so that our daughter could live a full life, recite poems, sing and talk to fellow kids without an impediment.

Hi. We are a family with three children suffering from congenital maxillofacial defects. My two twin sons Daniil and Denis Anissimov were both diagnosed with “congenital cleft upper lip and palate”. Their younger brother Artyom was diagnosed with “congenital submucous cleft palate”. 

The defects were more pronounced in my older twin sons Daniel and Denis. Although their surgical treatment started at six months old, this has not produced the desired effect of completely ridding them of their speech impediments as further surgeries and subsequent rehabilitation are still needed. But since the boys are already over 18, they are no longer eligible for insurance-covered treatment. 

In 2013, our youngest son Artyom was born. He was subsequently diagnosed with "rhinophony” meaning that the child now requires serious rehabilitation. 

We would be very grateful and very much appreciate if you could help Artyom receive the needed treatment at a rehabilitation center by September since he is expected to start school in the Fall of 2021. We very much hope and believe that Artyom will be able to attend a regular school without having to struggle with the problems his older sons often have to grapple with! Please help my boys to get rid of their speech defects and overcome their psychological problems (due to their physical appearance), as they are only just beginning their lives!

At birth, Nastya was diagnosed with "congenital complete bilateral cheiloschisis, combination alveolar and soft and hard palate cleft". We had to face a lot of difficulties trying to feed her: she had to be tube-fed, wouldn’t gain weight, had trouble swallowing. After we learned of the existence of the Moscow-based Institute of Congenital Maxillofacial Disorders, Nastya became one of its patients and underwent several operations there.

Nastya is 17 now. She’s had five surgeries. She is still suffering from congenital gnathoschisis of the alveolar process, and bilateral oronasal anastomosis, a defect of the anterior part of the hard palate, residual deformity of the upper lip and nose following primary bilateral cheilorhinoplasty. She’s suffering from respiratory impairment and speech impediments, has trouble swallowing and difficulty in mastication.

My daughter needs one more, last complex surgery and subsequent rehabilitation which will cost our family an amount of money that is too much for us to afford. I am a single mother raising two daughters and raising this much money is beyond my capabilities. Unfortunately, this hospital is not on the list of clinics where children with a diagnosis like ours can receive rehabilitation therapy free of charge, and there are no hospitals in our city where such surgeries are performed at all. The planned surgery will involve:
1) bilateral osteoplasty of the upper alveolar ridge with simultaneous corrective surgery of the hard palate using a graft taken from the dorsum of her tongue;
2) reconstructive bilateral cheilorhinoseptoplasty;
3) upper lip and nose correction surgery.

Please help us with raising funds to pay for my daughter Anastasia’s surgery. She is desperate to be a pretty and a healthy child. We will really appreciate your help.

I learned that I was expecting back in February 2020. This was going to be our first and wanted child. However, following our third screening test our yet unborn child was diagnosed with dextral cheiloschisis (cleft lip). I spent the rest of my pregnancy in tears, filled with both hope and fear thinking about how to accept this and help my child.

Our son Artemy was born on November 12, 2020 and diagnosed with “dextral cheiloschisis and alveolar cleft”. Through extensive research at a dedicated web forum, we were able to find tons of useful information and, most importantly, a doctor we could entrust the health of our precious son to.

Our baby can smile already, his smile is priceless, but every time I look at my son I am trying to picture what he would look like had his lip not been malformed.

How eagerly were we awaiting the arrival of our healthy son Ivan! We had decided on his name well ahead of his projected birth date. And so, we were in for a rude awakening when he was diagnosed with “congenital bilateral cheiloschisis, combination alveolar and soft and hard palate cleft”.

We didn’t know where to go to get proper surgical treatment. Luckily, we learned, through the grapevine, of the existence of Vasha Nadezhda, a charitable foundation that ended up sponsoring three of Vanya’s surgeries. We are extremely grateful to our hospital’s doctors and especially to Professor Gennady Vassilyevich Gonchakov!

Ivan has grown a lot, he’s 4.5 years old. He is suffering from a delay in speech development (developmental speech delay, general speech underdevelopment, neurodevelopmental delay, ADHD). He is very selective in communicating with fellow children as well as with adults. He may act withdrawn at times. But little Vanya is a real fighter combatting his disorders in small but sure steps. We just desperately lack the funds to afford quality rehabilitation therapy for our child. We really hope you could help us so we can give Vanya a chance for a fulfilling life!

This hasn’t been an easy year, and yet our family was blessed with its own bit of happiness: we had our third son Vyacheslav born on October 10. We had been waiting so eagerly for his arrival so imagine our shock when told, after his birth, that he had been diagnosed with “congenital complete bilateral soft and hard palate cleft”. Little Slava had to be tube-fed as he couldn’t breastfeed or be nursed through a bottle.

Through a stroke of luck, we learned of the existence of the Institute of Congenital Maxillofacial Disorders headed by Professor Gennady Vassilyevich Gonchakov. After we contacted Prof. Gonchakov, he reassured us that the disorder is treatable but the surgery isn’t covered by compulsory health insurance. To our chagrin, we are unable to afford this surgery as our sole income earner was laid off because of the COVID pandemic.

We would very much appreciate if you could help us fund the much-needed surgery so that our son’s development does not fall behind that of his peers’.