Good day!
We, the Shahmaev's family, are asking you to help our only daughter Inna.
Inna is now 9 years old, and she is seriously ill. For the first time the
disease declared itself when Inna was 4 years old. She stopped breathing in
her sleep and only by chance we were able to save her. Inna spent 4 months
in an intensive care unit. From time to time, she had difficulty breathing
and was administered artificial lung ventilation (ALV). The diagnosis was
sleep apnea syndrome.
The reason of the illness was never determined. A tumor was suspected, but
was not proven.
We sent documents to Moscow, but were refused admission to a hospital. With
much effort, the doctors succeeded in stabilizing Inna's state so she could
breathe on her own.
After the discharge from the hospital, we consulted at Endocrinology
institute in Moscow. But they could not find the cause of Inna's disease
either.
After 3 years, the same problem occurred again and this time the treatment
lasted for 2.5 years. The hospitals in Moscow again refused to treat Inna,
even though we applied there many times. All the decisions and recommendations
were given in absentia and judging the recommendations they did not read
attentively the case records that we had sent. The records said clearly that a
child needed artificial lung ventilation and tracheostoma was applied in the
first week of staying in an intensive care unit. The Children's Clinical
Hospital in Moscow recommends: "at home, the child should be provided
oxygen and an oxygen mask, if necessary tracheostoma application has to be
done". We went to the other hospitals, but they could not help us also.
Inna's conditon gets better then worsens. Each downturn is a new
trial for us.
From time to time, once in 1-5 days, Inna needs artificial lung ventilation.
Due to her breathing directly through tracheostoma with her lungs for 2.5
years, she has had long-lasting bronchitis. Periodically, the lung infection
she got at the hospital and pneumonia flare out. Each time Inna is prescribed
more and more potent antibiotics. But Inna does not give up and patiently
tolerates everything.
Out of hopelessness, we decided to buy artificial lung ventilation device
and other necessary equipment to let Inna live at home. For us to live
separately with our daughter becomes more and more difficult (we are allowed
to see Inna only 4-5 hours a day). She is bored in a hospital unit. In an
intensive care unit, she was not allowed to leave the bed and could walk
only when we were present. Every day Inna is asking us when she can return
home.
We started raising money for artificial lung ventilation device. A half of
the amount required was raised by the our city's residents and the second
half was promised to be given by sponsors. The governor granted us an
interest-free loan for 15 years to buy a flat, because we did not have our
own apartment.
We have learned recently that in Germany (Munich) such patients are
implanted a diaphragm pacemaker that enables people breathe without needing
an artificial lung ventilation device. This operation can increase Inna's
chances to recover and lead more active life, and it can reduce the risk of
possible serious complications. Inna needs the operation as soon as possible
while she is stable. The cost of the operation, 4-6 months treatment and air
travel is more than 200,000 euros.
We have nowhere to find such a vast amount of money! Please help us to pay
for the surgery. We understand that the amount is significant and it can
help many children, but it is not Inna's fault that the treatment is so
expensive. She too wants to live.
Evgenia and Eduard Shakhmaev
Home address:
654041, Kemerovsky region,
Novokuznetsk, ul. Sechenova, 6-47.
Contact phones:
+7 (3843) 779-776 (home)
+7 (913) 338-45-45 (Inna's mother's cell)
+7 (905) 990-41-69 (Inna's aunt's cell)
Update as of May 22, 2009.
The situation has changed. Now it is possible to perform the surgery
in Russia! In 2008, the Children's hospital of Novosibirsk performed a
successful operation of implanting a pacemaker. We contacted the hospital
and they agreed to operate Inna for free. We only need to buy a pacemaker
that is made in USA. It costs $66,342, and customs clearance will be extra
$10,000.
We understand that it is a huge amount of money, but it is only 1/3 of
the cost of the same operation in Germany that we were recommended by
the doctors. Also, the operation could reduce budget spending for Inna's
stay in intensive care unit. And most importantly, Inna will be able to
return home where we can surround her with around-the-clock love and care!
We are really hoping for the help of our supporters!
Inna's mother
Update as of July 1, 2009.
Thanks to invaluable help from Marina and gracious readiness of Avery Biomedical
Devices' employees to help Inna, we were able to get 50% discount on breathing
pacemaker! We now need to raise $35,450 to pay for the equipment.
The customs costs are under discussion.
The new price list
Update as of July 8, 2009.
Inna is in a serious but stable condition. Due to weather change, she
feels unwell and sleeps most of the time. New Inna's photos
Inna's mom
Update as of August 18, 2009.
Inna feels OK, but... the girl had never been to school.
She spent many years in intensive care unit, where only her
parents are allowed to come and visit for a short time. The
girl had gone wild, literally. She reacts with
aggression to many things.
When she had a visit from a massage therapist, Inna started
to kick and the therapist refused to massage her. Inna gets
no visits from teachers or psychologists. A psychologist used
to visit her, but then refused to return too. Inna did not
react the way she expected, so the psychologist said that
Inna cannot be helped and left.
The girl needs to have special care, affection, and good
relationships, not the emptiness she has now. Inna needs diapers,
as she is not allowed to get up and use the bathroom. Can you
imagine how it feels to be a 10-year-old and still wear diapers?
Inna receives 90 diapers a month, and she needs at least 170!
For the last two months, she was not getting even that many, and
her parents had to buy them on Inna's modest disability pension.
Inna has toys, but she does not play, and refuses to even talk.
Inna needs to be saved urgently, or she will go insane in the
isolation of the hospital room!
Ksenia, volunteer
Update as of August 25, 2009.
Inna's condition is stable. At the same time, she seems to be
improving psychologically: Inna started to show more interest in
her surroundings. She is more readily accepts contact.
I am very hopeful that Inna can return to normal life soon.
Ksenia, volunteer
Update as of March 13, 2010.
Our situation is the same. The equipment is undergoing certification
in Russia, without which surgery is not possible. The documents were
sent to the final authority that will actually issue certificate.
We hope it will take no more than another month.
So we do not have good news. But it's good that we have no bad news
either. Inna feels rather well, except the changes in weather affect
her significantly.
Update as of March 29, 2010.
We urgently need help with paying for the doctors'
training in Germany! Our families - Shakhmayevs,
Parmenovs and Kuchins -
were so happy that our children will fin ally be able to come
back home after several years spent in intensive care units of the
hospitals. Thanks to help of caring people, we were able to raise money for
this expensive equipment. We even managed to organize certification of the
equipment in Russia, because without it the health bureaucrats did not allow
the doctors to operate on our children.
Once the registration is completed (early May 2010), the surgeries are
planned to take place in Novosibirsk and Archangelsk for Inna Shakhmaeyva,
Dima Parmenov and Lisa Kuchina.
Now we are looking at the issue of post-surgical rehabilitation. The
doctors need to go for training at a clinic in Munich which has been
performing this surgery for many years. In Russia this method,
unfortunately, is not yet in place. The doctors need a certificate that
confirms that they completed training for installation and use of the
pacemaker (Mark IV) and the clinic in Germany will issue this document once
the training is over.
The training is necessary not only to ensure there are no more obstacles for
our children to undergo surgeries, but also for our Russian doctors to learn
from experienced German colleagues who know how to ensure successful
rehabilitation to return the patients to normal lives after the implantation
of pacemakers. All children are different and they need individualized
therapy. We are very concerned about our children because no one can tell
us how their bodies will react to the implants, so the experience of German
doctors will be very helpful.
M. Kafanova, neurosurgeon, and S. Sirota, intensive care specialist, who
will work on rehabilitation of our children, are planned to go for the
training.
These specialists already have experience with a successful implantation of
Mark IV pacemaker. They work at Children's hospital in Novosibirsk where
Dima Parmenov is currently hospitalized and where Inna Shakhmyeva will be
brought for surgery. They will also travel to Archangelsk for Lisa
Kuchina's operation.
For various reasons, mostly financial, we cannot go with our children for
treatment abroad, and there are no specialized clinics for children like
ours.
The training itself is free (we are very grateful to the German doctors!),
but the air tickets, visas, interpreter services and lodging will cost
120,000 - 150,000 rubles.
We are very hopeful for your support and will be very grateful
for any help!
Respectfully,
Shakhmayevs, Parmenovs and Kuchins families
Update as of April 1, 2010.
The travel date for (Dr. Kafanova) and
(Dr. Sirota)
for their training in Munich, Germany was set for April 13th. We urgently
need to raise money for their travel expenses!
Update as of April 20, 2010.
The doctors have finally returned from training in Germany. They flew
there without a problem, but the return trip was quite an adventure.
Due to a volcano explosion, all flights from Germany on April 16th
were canceled, and the doctors had to get to Moscow by several trains.
They then had to order new air tickets from Moscow to Novosibirsk,
which were additional expenses.
But most importantly, the trip was necessary to ensure our
children's safety.
Evgeniya, Inna's mom
Update as of May 18, 2010.
On May 17th the long-awaited certification of Mark IV breathing
pacemaker was completed. Now our children can finally have surgeries.
Inna's and Dima Parmenov's surgeries are
scheduled for May 31, and Lisa Kuchina's -
for June 3-4.
After the surgeries, they are planned to have two months of
rehabilitation.
We are enormously grateful to everyone for
their help and support!
Evgenia, Inna's mom
Update as of June 8, 2010.
The surgery was postponed due to issues with customs.
The equipment is held up at the customs.
Update as of June 18, 2010.
Inna's surgery went well. Inna and Dima are both recovering.
Update as of July 26, 2010.
Inna's device has a technical problem, and Inna's left side is not reacting
to electric impulse, which caused swelling. The electrode may have moved off
the nerve, so the doctors are waiting for Avery representative to perform
a second surgery - after August 10th. All expenses to repair the transmitter
and bioengineer's travel will be borne by Avery.
Update as of August 27, 2010.
We are doing well. Inna breathes on Mark IV stimulator for four hours already.
The doctors told us that once she can breathe on it the whole night, we would
be able to go home.
Training will take two more weeks. Inna is now also undergoing a course of
therapy to restore her immune system and intestinal microflora.
I cannot believe that so soon Innochka will be at home. It took us so long
to get to this day…
Thank God, all ended well. I am enormously grateful to everyone for their help
and support! Thank you! Thank you! Thank you! I am ready to yell this loud for
everyone to hear! Thank you.
Eugenia, Inna's mom
Correspondent Bank:
Deutsche Bank Trust Company Americas,
SWIFT: BKTRUS33
Beneficiary Bank:
OJSC Bank Petrovski (f. EEFC Bank Plc.)
SWIFT: PETRRU2P
Account No. 04096265
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation",
account # 40703840712001000468
*,**
Correspondent Bank:
Deutsche Bank AG,
SWIFT: DEUTDEFF
Beneficiary Bank:
OJSC Bank Petrovski (f. EEFC Bank Plc.)
SWIFT: PETRRU2P
Account No. 100 9497918 1000
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation",
account # 40703978312001000468
*,**
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