We can help.

Our Internet project was aimed to help little human beings. There is the original letter below.

“My name is Olga Fedorouk, I’m the mother of a handicapped kid with a scarce genetic disease. Our baby has Smith-Lamely-Opits syndrome and many other intrauterine growth pathologies.
The baby was born on June 6th 2008 in Kiev maternity hospital №7.

Here is our history:
“Little Timofey has quite an unordinary story.
His eldest brother, a healthy and nice boy, was born 2 years ago. In a month and 4 days he got into a car accident with his parents in Rovno region where his mother was from. Father survived, mother “got away” with compressive spine fracture, but the baby was lost… 
In spite of the trauma, which is usually a doctor’s doom for patients, in two years mother learned over again to get up, walk, and tried to live jolly after all what she has been through. Parents wanted very much that Timofey would come into this world. Mother even gave birth to him in a natural way – “all deaths for spite”. Pregnancy flied relatively normally, delivery passed without any peculiarities which would harm the baby. Timofey was born in time with a normal (2800 g) weigh. 
Right after the delivery it revealed that not everything was okay with a boy. For several weeks baby stayed at new-born pathology unit in Kiev City Children Clinical Hospital №1. During the first months of life he had to take 8 antibacterial and antimycotic preparations!!!
Cleft soft palate, lower jaw hypoplasia, scrotal hypospadias (male urethra malposition), second and third toes syndactyly, duplication of left kidney, nephroptosis, and what has alerted immediately was body weight loss which exceeded the physiological one considerably.
Parents started to consult specialists but neither new-born pathology unit, nor Ohmatdet Hospital, where mother Olga stayed with Timofey, could express an unambiguous point of view. Maxillofacial surgeons promised to start palate surgery cycle at the age of 1, urologists anticipated 4 operations for Timofey. Paediatricians just lifted their hands in dismay…”
At the age of 1 month and a half vomiting and absence of stool for more than a week disturbed the watchful mother. Pylorostenosis (the narrowing of pylorus in the upper department of ventricle, which, in case of late interference, may cause a fatal outcome due to dehydration as a result of permanent vomiting) was diagnosed very late; Timofey was urgently operated in Ohmatdet Hospital. As surgeons said they were lucky because one day delay may result in exit.
The parents’ affliction didn’t end thereon. Vomiting didn’t stop after the surgery (it happened for ten times a day) though x-ray photography showed the operation was successful. In addition Olya began to notice small, but certain lags in baby’s development (for example, the baby started holding its head up only at the age of 4 months). She immediately started to consult neurologists and to massage the kid daily. Probably due to a persistence and patience of parents some progress in Timofey’s development appeared, he began to hold the head up, smile, recognize mum and dad, tried to rise when grabbling. But vomiting became more frequent and spoiled the life to both the baby and parents. It is necessary to add that all the time since the age of a week a child was fed exceptionally by the use of probe due to mouth apparatus characteristics. The baby can neither suck, nor swallow without assistance.
Against all these turns of life another trouble happened with the family – the father, the only breadwinner, was dismissed a year before retirement. Neither employment agency, nor personal job seeking brought any results. For a few months family had to pay debts for previous treatment, surgeries, medicines, and massages. But nobody could give the answer to a question what is with the baby, and money was getting over…
Finally a baby was examined by the geneticists at the medical genetic center of Ohmatdet Hospital. After the inspection Pierre Robin syndrome (cleft palate and lower jaw hypoplasia) and Smith-Lamely-Opits syndrome were diagnosed. The last is a very rare genetic disease under which because of complete absence of cholesterol making by the organism a child can’t adequately develop neither mentally nor physically unless being fed with a special cholesterol enriched food. Literally every week may be the last in such cases. As well as under phenylketonuria and some other metabolism diseases if timely diagnosed and treated (special diet, rehabilitation complex are prescribed etc.) a child has a chance to grow up into a normal human since these syndromes not always are accompanied by the lag in mental development.
Unfortunately, there is no experience of such syndrome treatment in Ukraine. The geneticists from Ohmatdet told us that our child is the first case in Ukraine. But we found out that such babies were in Russia and in Moscow they were treated.
It’s extremely important for us at this stage not to lose time and to get competent Moscow doctors consultation. Sadly, we are 8,5 months old now and the weight of the baby is only 4,400 kg and child’s stature is 65 sm.
Yes, it is 9 months age soon and it’s time to do the palate plasty because if it’s not done now there can be problems with speech in the future. The next operations on genitals we also would like to carry out in Moscow hospital because there are specialists exactly in this sphere (http://www.drrudin.ru/gyp.php, our variant is shown and described on a fig. № 2). We’ve contacted them and were promised to be accepted and operated but it costs a lot!
I do not know whether it is important but our child has the Chernobyl disaster victim card because his father was the crash consequences liquidator, and his mother lived in the intensified radio-ecological control zone of 4th category.

For these reasons we, Timofey’s parents, ask you for financial aid to provide the surgeries, following rehabilitations and treatment. 
If you need additional information or documents you can contact us by the tel. +38 044 503-66-64 or +38 097 719 03 45 (mother Olga Nikolaevna).

Waiting for your answer! 
 
With kind regards, Rozsohy family.”

So that’s the story, we are expecting the information from the Moscow hospitals on the treatment costs.
Bank details for financial aid:
Beneficiary – Rozsoha Anatoly Ivanovich
Beneficiary account number – 262061723808
Beneficiary identity code – 1812306970
Beneficiary bank name – Raiffeisen Bank Aval
Bank code – 380805 
Enterprises and organizations classifier code – 23494105

Internet-project www.detdom.info coordinator
Mikhail Scherbina +38 050 416 06 18
March 4th 2009. News from the mother:
“For today the volunteer from Moscow tries to establish relations with doctors and clinics where we would like our kid to be examined and operated. Urologist Roudin Yury Edvartovich has already answered and gave us the list of additional check-ups we need to have at home. On the results of these check-ups he will fix the day of inspection and tell a sum needed to conduct a cycle of surgeries. Maxillofacial surgeons and geneticists haven’t replied yet. We pray and hope that Timosha was given a chance to become a normal child, to learn to eat as healthy babies, and began to gain in weight. Having 4,5 kilos weight (as we have for today) is too little for a 9-month baby especially to conduct surgeries. Kiev doctors who we consulted in Ohmatdet Hospital and Children Clinical Hospital №7 warned that normal weight is quite important when anesthesia is injected. Unfortunately, until palate plasty is carried out a child cannot eat normally. But the forced feeding doesn’t give the desired result. Therefore, we are waiting for an answer from the doctors and hope for humane compassion and help.”
March 6th 2009.
We’ve got such news:
“The history of Timofey, the baby with a rare genetic disease Smith-Lamely-Opits syndrome (SLOS) is still in progress. Unfortunately, they don’t undertake complex surveillance of children with SLOS and concomitant innate anomalies. Therefore, we have contacted Russian centers which have the experience of such babies treatment and even managed to associate with the mom of child with the same diagnosis who grows up and develops perfectly thanks to the Russian doctors! So we have made considerable progress in these few months…
On the results of numerous consultations with specialists the following plan of actions was outlined:
1. A consultation with the possibility of simultaneous hospitalization for an inspection concerning the SLOS syndrome in the Scientific center of Russian Academy of Medical Sciences. 
The consultation costs 1070 roubles, to stay for 1 day in hospital in the cheapest four-bed room costs 1000 roubles a day. Total is 11700 roubles for 10 days (as a minimum). To this sum, the cost of manipulations and researches should be added which we can’t predict right now. There is a price-list in the hospital but it will be clear only on-site what tests we should pass and how much of them there will be.
2. A consultation in the Saint Vladimir Hospital on maxillofacial surgery to clarify the terms of palate operation (we think 1200 roubles minimum).
3. A consultation of urologist specialized on hypospadias in the same hospital – 1200 roubles more…
Our Moscow volunteer Aliona Shorzhina (offshore) managed to make an appointment in Russian Academy of Medical Sciences on April 6th, Monday. So we have a month to raise about 15 000 roubles plus about 2000 UAH for the transportation. It’s approximately 700 USD and it’s ONLY for consultation and hospital stay. But at least 4-5 operations are in store for the baby as Aliona clarified with urologists and maxillofacial surgeons in the Saint Vladimir Hospital. Having baby’s films and case records scrutinized, doctors concluded that under at Timosha’s pathology to have 2-3 urological operations and the same amount of maxillofacial one would be real good luck!
And so far parents and the baby strive for a normal life nevertheless. Due to the cholesterol deficit the baby’s muscles are not developed at all in spite of regular massage courses and exercises on a ball which parents do. Still and all he tries to get up… falls and tries again… Due to persistent endeavor of Olya and detailed recommendations of gastroenterologists from the Kiev City Children Gastroenterology Center baby’s vomiting slowly started to cease gradually and mother began to spoon-feed him – a little at a time but he eats himself!!!! When having sound eating pattern, thoroughly planned diet, and certain biochemical indexes control the baby will be able to overtake his coevals!
Just for this reason we want to send the baby where they are really ready to help him. And that’s why we continue to raise funds for little Timofey Rozsoha. We believe that having such persistent and loving parents and such yearning for LIVING the baby will stand all the ordeals that are ahead for him!!!”

Last news source: http://likarinfund.org/content/articles/14.html

Site about Timosha http://timosha.ucoz.ru/