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Posted By: Yulya Help Russian little boy, please - 05/12/04 09:17 PM
Good day!

My name is Julia and I am from Russia. I am a
mother of a 5,5 year old boy, whose name is Dmitri or Dima for short. The problem is my son's health. He suffers from atopical
dermatitis, food allergy, bronchial asthma, chronical allergical rhinitis and conjunctivitis, neurological problems (night dream
disorder), connective tissue disoder (or MASS phenotype, Marfan related syndrome, and the affection of it: rotation of right side
kidney, additional chord on average of third of left ventricle of heart, arthralgy, V-deformation of chest, joint hypermobility, eye
myopia). I can suspend all medical documents, per request.

First of all, my son has been suffering from allergy since he was born, he had to drink soya milk instead of mother's milk. Later
it was found out he can't eat baby canned food (the food specially for babies, bought in shops), he got terrible allergy to it. And
still he can't eat any canned food. In the next years it was found out that he can not eat any diary products, chicken, fat meat,
sausages, fish, citrus, orange, margarine, eggs, strawberries, honey, nuts, kiwi, rice,honey, nuts, chocolate and any other sweets,
any food containing conservants and artificial/colouring stuff, carrots, all fruit and vegetables having red/orange colour, etc. The
diagnose of
this illness is atopic dermatitis and food allergy. Dima is also allergic to cat's/dog's fur and home dust- it is chronical
rhinitis, his nose is running and eyes are tearing. We have not made any skin tests (because it is painful), but I'm afraid Dima
might be allergic to trees, weeds and cereal pollen, jsut like I do.

Dima needs special diet meals, which are more expensive than normal ones.Some of the meals are hard or even impossible to find in
shops (like soya products: soya yoghurt, soya cheese, etc), though he needs those products a lot, because they are reach of protein.
Dima needs protein first for the growth and second he needs more protein than a normal child due to MASS-syndrome - the illness
causes a lack of protein in tissues of the body.

The medicine against asthma and allergy is very expensive here and insurance system do not work at all, so we have to buy all the
medicine for full price. The doctor has also prescribed to take Dima to mountains or to the southern sea in summer every year...
That way would help him to avoid severe form of asthma and reduce asthma aggravations/attacks during the year, as well as reduce
atopic dermatitis. Living in a warm sunny climate for a long time could really help and stop the progress of both illness, I've read
about it medical books (by the way, I've read a lot of articles and books on my son's illnesses). Our climate is very cold, wet and
rainy, with small quantity of sunny days per year. But what about taking Dima to the sea or mountains, while we can hardly afford to
buy all the medicine and special food he needs?! Plus I myself suffer from neurodermitis, allergy, eczema, chronical allergical
rhinitis, chronical pielonephritits, chronical polyarthritis, asthmatic bronchitis, so I myself need medicine almost all the
time...Now I'm a jobless, but I had been working as a secretary till Dec.2003, but I was asked to leave, after my son got an asthma
aggregation in Dec.2003 and I had to stay at home for 1,5 weeks with him.The boss said he'd better find another worker, who do not
have kids with health problems. He was afraid my son's health may got worse, so he might have attacks and aggravation more often, so
Id have to stay at home with him more often too... I'm graduated form uni, my specialization is tourist management. But I couldn't
find a job in tourism, it is not easy, that is why I worked as a secretary... Here in Russia it is very difficult for a woman with a
child to find a job.


What worries me is MASS-syndrome, which is a serious rare diseases. I've read some info on it, and it seems there is no real
treatment of this disorder. All we can do is to try to stop the progress. I asked our pediatrican at local clinic, but she knows
nothing (!) of this disorder. I don't know where I could find a doctor who could help us to do something with the MASS-syndrome. The
diagnose is MASS-syndrome was stated at City Children's Diagnostic Centre (CCDC), there are good doctors, but they do not provide
treatment, they just hope to state the diagnose, when doctors from local clinics can't state it. The doctor from the CCDC said
there might be a kind of treatment against MASS-syndrome, but it cost thousands of US dollars, so I'll probably have to leave it as
it is (the doctor guessed I have no thousands of USD). I don't know if it is true that there is a treatment against MASS-syndrome
somewhere in the city, because I've tried to find something, but without success...

I'm looking for any kind of help, either any info on MASS-syndrome treatment or a possibility of taking my son to a charity summer
camp at the sea or mountains or nay other kind of help like used clothes, toys or soya food or medicine. If there is someone who
does not need boy's clothes anymore, would it be
possible to sacrifice it to my son? I would be so much thankful to accept it. I would accept used boy's clothes, shoes, things,
toys. Sizes: clothes 116-128 cm (6 years), shoes 29-30 (European size). Thank you very much in advance. I would really appreciate
your help.

I am sorry for writing all those things which might be not so interesting for you. I just wanted to tell you about the situation I
am in. It is always hard to ask and I feel guilty doing this, but it is for my son. I would prefer to help others than to be helped,
but I am in such a difficult situation, so I do not have other way out than to ask for a help.

I may send a photo of my son next time, when I get any reply.

Thank you very much for reading my letter.

I close with hope to receive any reply.

Best wishes.

Sincerely,

Julia

my e mail:

yuk246@yandex.ru


my postal address:

Julia Katkova
POB 276
St.Petersburg-332
198332 Russia
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