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
Update as of September 22, 2010.
We are at home! We are finally at home! I cannot believe myself
it had finally happened.
We got home OK. Inna never gets tired of all the toys.
She keeps playing with all of them.
In Novosibirsk, the whole hospital was seeing us home.
All the doctors who treated Inna in the last three months came.
Even hospital chief Manankin came to wish us a good trip.
I could not even find words to thank him at the time.
To be honest, I am not used to so much care and attention,
and this of course, was very inspiring.
I am enormously grateful to all the hospital employees,
and everyone who has been helping us all this time, everyone
who donated for Inna's device.
We are grateful to all and each of you.
Eugenia, Inna's mom
Update as of October 12, 2010.
Our municipal administration and Health Committee promised us to help
with supplies needed to care for Inna, and also promised to buy
capnograph, an instrument to measure carbon dioxide content.
We also go for CBC and urine analysis weekly. So we are gradually
getting used to living at home.
Inna is already very comfortable at home. She insists that we walk
her around our apartment. She is very curious about everything and
wants to see it up close. As soon as she wakes up, she demands to be
taken to the living room (she does not walk very well without
support yet) because she can play with our cat there. I do not let
the cat to get in her bed.
The only thing that concerns us is that Inna has seizures every week,
although she takes the same medications as before. The doctors are
telling us that it could be due to adjustment to the new surroundings
or to the weather that has not been very good lately.
Eugenia, Inna's mom
Update as of November 11, 2010.
We still have not received financial aid we were promised by
Administration (they have no money in Treasury). Capnograph was
also promised, but it too is not yet purchased.
Inna recently had her birthday. She is now 12 years old! New Inna's photos
Eugenia, Inna's mom
Update as of November 19, 2010.
We finally got financial aid, which we will use to buy supplies
for three months. If we manage to save some money, we could use it
to also purchase foot pump (in case of loss of power).
So we are now running around and buying things because we will have
to report on its use within a month.
Inna feels well and her test results are normal. She became much
more social and calm. She can dress herself and put her toys away,
which she has not done in a while.
I am really hopeful that she will start talking, because she became
making new sounds and tries to explain something, but for now
she cannot make words. Inna's new photo.
Eugenia, Inna's mom
Update as of December 20, 2010.
Avery Biomedical is now offering us to buy a new transmitter for
Inna at significantly reduced price. The transmitter we have is used
and its warranty expired in 2005. We would like to buy a new one.
The one we have already malfunctioned once, and we don't know if
it will be reliable. And we don't have a backup transmitter.
We will be very grateful for your help!
Evgenia, Inna's mom
Update as of March 17, 2011.
Inna's recovery period after the surgery was complicated.
The implants moved and her left side still does not respond well
to impulse. Inna also has seizures more frequently and it is very
important to find out if the stimulator is causing them.
It may be due to displacement of an electrode that was attached to
the nerve, because Inna had a very large swelling and hematoma on
her left side after surgery.
The doctors in Novosibirsk are unable to find the reason for the weak
response of diaphragm to the nerve stimulation and for the seizures,
as they do not have the right equipment. There are no clinics in
Russia that would work on rehabilitating children with this condition,
so we wrote to Germany again. There the doctors have many years of
experience treating and rehabilitating children and adults with
Undine Syndrome. We wrote to the German clinic where we could not
get in 2008 with a request for a consultation regarding rehabilitation
for Inna. The clinic is ready to take us in for examination and therapy.
After FIVE long years in the hospital, and not in a regular room,
but intensive care from which Inna could not leave even for a day,
she is finally home. But our joy is marred by the fact that seizures
are not allowing her recover and develop normally.
In the last three years in the hospital, Inna stopped speaking and
lost interest to the world around her. After her return home, she is
once again enjoying life. She is curious about everything, tries
to do everything by herself and even started talking again.
However, after severe seizures she lost speech again and was limping
for a few days. It is very important to understand and fix the reason
for the seizures. This is why we are asking for your help with
raising money for Inna again! Please help Inna return to normal life!
Evgenia, Inna's mom Bill from Munich clinic Clinical summary from polyclinic
Update as of May 10, 2011.
We have great news: German charity Ein Herz fur Kinder will donate
10,000 euros for Inna's treatment. Money will be transferred to
the clinic directly. The rest of the money still needs to be raised.
We are also sincerely grateful to AiF - Kind
Heart fund for being ready to raise money for Inna's treatment!
Evgenia, Inna's mom
Update as of May 20, 2011.
AiF - Kind Heart fund
is raising money for Inna's hospital bill and air tickets.
Inna's parents will also need extra money to pay for
translation services, visas, insurance, etc. The amount
needed is estimated to be close to 88,000 rubles.
Update as of June 14, 2011.
Inna feels well and recently we went to the park and she enjoyed the rides.
I was worried that crowds and noise could scare her, but it turned out
she likes it. She was very curious about other people.
We have to postpone our trip to Germany to October 2011. This is due
to our not being informed that the planned hospitalization date
(June 21) would not be possible to move to July or August due to
lack of available space. And we will not be
able to raise money by June 21.
The closest date Inna may be hospitalized is October 25, 2011.
We are disappointed we will have to wait so long, but there is
nothing we can do. Unfortunately, not everything happens
according to our wishes.
Update as of June 29, 2011.
Generally all is well with us. A few days ago we went to the country,
and Inna just loved it there. We made chicken kebabs, which Inna
could not stop eating.
She used to love throwing stones into the river, and as soon as we
came to the river she remembered that and started doing that again!
But last night she had cramps again, five times during one the night.
Inna got so exhausted that she then slept in until 12 am.
By now we have raised 41,450 roubles of the 88 thousand needed
to cover additional costs. We still need another 46,550 roubles. New photo of Inna
Eugenia, Inna's mom
Update as of July 6, 2011.
We have a new achievement! Inna has been breathing without
oxygen support for over a month! I am very, very hopeful
that we will never need it again.
Eugenia, Inna's mom
Update as of August 10, 2011.
Hurray! Hurray! Hurray! Aif-Kind Heart charity paid for Inna's therapy
in Germany! The charity transferred 68,868 euros to the clinic, and Ein
Herz fur Kinder fund promised to donate 10,000 more euros!
We are endlessly grateful to Margarita Shirokova, Aif-Kind Heart director,
for their support!
We raised money for translator, visas and insurance, and just in case we
take out a small bank loan.
Thank you so much for your help and support! Thanks to help from caring
people Inna has a chance for complete recovery!
Evgenia, Inna's mom
Update as of August 26, 2011.
AiF Kind Heart charity gracefully agreed to buy tickets for Inna and I.
Thank you very much! Inna's dad will pay for his flight and his employer
promised to reimburse him.
Evgenia, Inna's mom
Update as of September 26, 2011.
Inna feels well. We are getting ready for the trip. We got visas and
bought tickets, and cannot wait to go. We will fly on October 24th to
Moscow and the next morning will fly to Munich.
We plan to return on November 30th.
Evgenia, Inna's mom
Update as of November 21, 2011.
Inna started drawing again and making bead ornaments. She enjoys
working on that. At home we offered her many crafts, but she was
never interested. And when we were stuck at Sheremetyevo airport,
we were placed at a conference room. It had pens and paper on the
table and Inna picked them up and started drawing something.
Then our translator Natalia gave Inna a pad, markers and pencils
for her birthday. And now Inna draws every day and puts her creations
up on the wall. After the surgery Natalia brought Inna a beautiful
bead set. Now Inna makes a new ornament daily.
Update as of November 23, 2011.
The surgery went well! Inna feels great! She was already transferred
to the pediatric unit and she breathes on a ventilator.
Bronchoscopy prior to the surgery showed that there are no issues with trachea.
However, tracheostomy is not adequate, as it is too long, and its end pushes
on bronchi and irritates tissue, which causes profuse mucus production
and cough. We were told that several different tracheostomies from various
manufacturers will be ordered for Inna, so that an optimal one will be
selected for Inna.
The money transferred for treatment is sufficient, and most likely there
will be some left over, and clinic will return it to the fund. And since
implant replacement was not necessary (the ones already installed were moved),
there was enough money to buy a new breathing pacemaker.
Today we expect to see a neurologist and a nutrition specialist. They will
prescribe further treatment that Inna will receive at home. I want Inna to
undergo CT scan as well, as this study does not produce good quality
images in our home town. Inna has not had MRI or CT scans
for over 3 years.
After additional tests, the source of seizures was finally found. Inna was
diagnosed with right-sided focal epilepsy. Depakine chrono will be replaced
by a German brand, Apudant (oxcarbazepine). It is sold as Trileptal in Russia.
But we were recommended Apudant, and we will get an annual supply of it.
And since we will need to return to the clinic in a year for examination,
we will be able to buy more of it then. We will just have to save up,
as this drug is quite expensive.
We also saw physical therapist, but the only thing Inna agreed to do was
to get on a swing.
And here she
is walking with her dad in Botanical Garden.
Inna is a little sick - has a runny nose. Lately she has been irritable,
as she is clearly tired of being here. A little longer, and we should be home.
Evgenia, Inna's mom
Update as of December 6, 2011.
We are back home. We are very happy with the trip! Inna had complete
evaluation and surgery, a new breathing pacemaker was purchased and
antennas to it for 4 years. She also was prescribed new hormonal
therapy and we bought medical equipment - drainage system on batteries
and a capnograph (an instrument used to measure the carbon dioxide (CO2)
concentration in exhaled air sample). We bought supplies for a year
to take care of tracheostomy (special tissue for tracheostomy, belts,
valves and cleaning supplies), and anti-seizure drug Apudant (analog
of trileptal) for a year as well.
In the first days Inna had diagnostic of the breathing pacemaker function
and all the settings were corrected. Her subcutaneous implants were also
placed lower under her chest, as before they were placed too close to
each other. Now antennas do not touch each other and do not create
interruptions.
During surgery Inna had bronchoscopy that did not find any issues with
her trachea, other than finding that tracheostomy is too long and presses
into one of the bronchi. The doctors selected a new, better fitting
for Inna tracheostomy.
Brain examination discovered a right sided focal epilepsy, and it was
recommended to replace anticonvulsant Depakine Chrono with Apudant.
We are now gradually starting Inna on it according to the schedule
prepared by a neurologist. We are also slowly taking Inna off Depakine.
The examination did not find any issues with Inna's heart, liver or lungs.
We were happy about that. She has small problems with kidneys and adrenal
gland. She was prescribed teraxin and hydrocortisone.
Hormonal evaluation showed that Inna has insufficient growth hormone, and
the doctors recommended starting therapy with growth hormone as soon
as possible. This therapy is expensive and lengthy. It lasts 2-3 years
and costs tens of thousands of euros. Courses of injections are done at home.
If treatment is not started now, Inna most likely will not grow more
than 10-15 cm. The most important thing now is to find the opportunity
to buy this drug. I will look for ways to get federal funding.
In a year we will need to return to this clinic for repeat tests and
check on the breathing pacemaker. We already have appointments scheduled
(for two weeks), starting on September 17th. The doctors plan to take
tracheostomy out completely then.
Hope it will go as planned.
Evgenia, Inna's mom
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703840712001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT: RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT: RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Bank of New York Mellon,
New York, USA
SWIFT: IRVT US 3N Correspondent Account No:
8901003069
Correspondent Bank #2:
JP Morgan Chase Bank,
New York, USA
SWIFT: CHAS US 33 Correspondent Account No:
822839205
*,**
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703978312001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Deutsche Bank AG,
SWIFT: DEUT DE FF Correspondent Account No:
9477134
Correspondent Bank #2:
Commerzbank AG,
Frankfurt am Main, Germany
SWIFT: COBA DE FF Correspondent Account No:
400886482900
*,**
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