Appointments scheduled for April 6; still in search for an apartment in Pittsburgh!

Mikhael has got an appointment at UPMC on April 6th! After tests taken he will be listed in the national transplants queue. We don’t know if Mikhael will have to be waiting takes days or weeks but hope for the best! Kids are happy being united but it is still quite tiring with acclimatization… Less and less days are left while we have to find an apartment: wheelchair friendly and preferably furnished with 3 bedrooms. So far sounds (again) impossible but… But we believe and would be grateful for any tips!

And here is a nice story about Mira and Tor’s trip to Pittsburgh last weekend. As some of you may know, a medical plane was not allowing many people on board and only Mikhael, Iryna and Freia Alexandra landed in Pittsburg at first. But last weekend all the family reunited as Mira and Tor (8 and 6 years old) crossed Atlantic and reached Pittsburg! All by themselves! As Mira said: food was good, cartoons were a bit for babies but ok, and she enjoyed an adventure! Tor was not as happy, but he followed his big sister and together they managed it all.

But this is not the end of the story. Actually, they were special passengers on board. Neighbor of Mikhael’s step father and friend is an AirFrance pilot. He contacted his friend who was the pilot on Mira and Tor’s flight and asked for special attention to the two small children travelling alone. He did. Here is the message about their interaction that we recently received.

Message from the captain from their flight:” We took good care of the children. Too cute. The little one is my daughter’s age. I spoke with her on the plane. She liked the flight, the movies, the food. I showed her lots of photos of my daughter. We talked about skiing, Mouans-Sartoux, Norway… I hope that her dad will recover and that would be a beautiful thing.Their life is made up of little gifts for now, I hope they get their ultimate gift soon. Good luck to all of you.”

Mira and Tor have arrived in Pittsburgh

The two older kids, Mira and Tor, have joined the rest of the family in Pittsburgh.

(Great) friends of Mikhael and Irina had prepared the apartment to facilitate their arrival: ready meals, shopping done, games for children…

Thank you for your many comments and messages of support! Count on us to continue to keep you informed of what happens next.

Next step for Mikhael: medical exams and appointments. May the force be with him!

Hooray! we raised 1 000 000$!

Dear family, friends, colleagues, supporters of my fight for life!

A couple of months ago I had no hope. I would not have believed it then, but today I have $1M in collected donations, I am based 10 minutes away from the treatment center, and my first appointments are already scheduled. Yes, you read it right! We hit our campaign target and collected an unbelievable amount of $1M in less than three weeks.

The magnitude of this amount, the speed with which supporters answered my call, the solidarity of people around the world, the incredible number of personal messages of support that I received, have all been absolutely amazing! I THANK YOU and I thank thousands of people across the world for supporting me in this fight!

The $1M that we collected will be used to pay the hospital (UPMC) for the transplants and for the estimated costs of the post-operational treatment. This is a huge relief, allowing me to concentrate on what matters most right now – the treatment.

I am looking forward to thanking all of you personally when I get through this fight.

Mikhael

Mikhael is in Pittsburgh!

Private jet, anyone? Mikhael and his family have safely arrived in Pittsburgh after a trip with air ambulance. One big step closer to the goal!

Mikhael’s story was shared by French media, including the TV channel M6, radio France Azur and L’OBS journal. More articles and recordings of emissions are forthcoming. Check our new Media page!

Also, 80%, or $800 000, have already been raised. This would seem impossible when we just started a couple of weeks ago, but here we are. The last hundreds of thousands are the most complicated to collect, please continue to be mobilized! Spread the word, ask friends to share and donate.

76% raised and more great news!

There are sooooo many things to share!

1. We’ve got our passports with American visas back to us!

2. Air ambulance to Pittsburgh is scheduled on Tuesday, March 23rd.

3. 76% of the needed for the operation sum is raised.

4. Boris Akunin, a well known Russian writer, has reposted our story on his official FB page.

5. A painting master class with @podolyanka_art is scheduled on March 27th to support the campaign. Click here for the event page on Facebook!

6. Flyers for distribution are ready in 5 languages: English, Ukrainian, Russian, French, Norwegian – leave your email in comments and we send it to hang at AD desks in shops or postboxes.

7. Last week we were interviewed by Russian TV channel ‘Dozd’, French TV ‘M6’ and Norwegian newspaper ‘Aftenbladet’. More to follow!

8. We receive supporting stories from all over the world how people spread the word about our story! THANK YOU SO MUCH!!!

Mikhael’s testimony: My everyday life with Dyskeratosis Congenita

I was 12 when I was diagnosed, but the disease triggered fibrosis in the lungs. Fibrosis that had been dormant all my life and started to get worse abruptly only 1 year ago. My lungs started to stiffen like a drying sponge.

Today fibrosis is part of my daily life.  It is treacherous because at rest, even with a tube in my nose, I forget about it, not feeling pain.

But when I make the slightest effort – to get up, take a few steps – it reminds itself: I have trouble breathing, and it’s scary. I have to stop quickly to recover, with the help of my oxygen cylinder.

Many ask me how I feel. Imagine a pillow pressed against your face and preventing you from breathing in. Imagine you couldn’t take it off. Imagine that the only hope is to reach the cylinder with oxygen and increase the flow.

The most difficult thing for me is the impression of being a burden on my family: my wife has to manage the cooking alone because it is risky to bring my oxygen tank too close to the gas stove; putting to bed my 15 month old daughter is impossible; changing her diaper is very difficult and wears me out for the day.

I continue the fight, with the support of my family and my relatives.

Beyond my fight, I want this campaign to help advance the treatment of this disease, to make it accessible to as many people as possible.

A message from Mira, Mikhael’s eldest daughter

Mira, Mikhael’s eldest daughter, wrote a little letter about her father and their upcoming trip to Pittsburgh. It is a very difficult and scary situation for the entire family, children included. Let’s help them! Spread the word!
………………………………………………..

I am going to travel to the USA. I will see my friends. My friends Awiw and Milan. My father is sick. We fly to the USA to cure him. I love him and he loves me. I worry about him. My mother works a lot but fast. My sister eats a lot! She is very active. Tor and me, we have a lot of things. Tor and me, we will be in the airplane selv. I’m a little afraid. My grandmother is very afraid. I write very fast now. I love to travel. My mother didn’t want to cook today. It was difficult. But me and Tor, we cook sausages. I am tired now so i go to sleep now.

From Mira!☺
………………………………………………..

Help us to save Mikhael’s life! Here you can find several (worldwide) options to donate: https://savemikhaelkrotov.org/donate/

Mikhael’s story: https://savemikhaelkrotov.org/my-story/

Mikhael’s Facebook Page: https://www.facebook.com/SaveMikhaelKrotov/

Thank you all and please share!

Alarming update. One lung is gone

UPDATE: Mikhael was in the hospital today for lungs scan and came back with unfortunate news: his left lung is not functioning anymore, so Mikhael is breathing with only part of the right lung. For us it means that time is ticking even faster and next step is to transport Mikhael to Pittsburg asap.Please, SHARE Mikhael’s story once more to move closer to 1M$ target!We will post a financial update later today – days are getting more busy to prepare for Mikhael’s transfer

Help us to save Mikhael’s life! Here you can find several (worldwide) options to donate: https://savemikhaelkrotov.org/donate/

Mikhael’s story: https://savemikhaelkrotov.org/my-story/

Mikhael’s Facebook Page: https://www.facebook.com/SaveMikhaelKrotov/

Thank you all and please share!

#SaveMikhaelKrotov

Per gli amici italiani: Salva Mikhael, trapianto polmonare d’urgenza

Buongiorno,

mi chiamo Mikhael Krotov. Sono un padre di famiglia, ho 38 anni, e tra pochi mesi non potrò più usare i polmoni.

Ho una rara malattia genetica, la discheratosi congenita, che ha cambiato tutto in brevissimo tempo. Fortunatamente ho una speranza, che risiede a Pittsburgh, negli Stati Uniti, dove un team di medici UPMC ha messo a punto un protocollo che potrebbe salvarmi. Per me, per mia moglie, per i nostri 3 figli, sarebbe un miracolo.

Sarebbe anche un ulteriore passo per un grandissimo progresso medico guidato dai migliori specialisti, un miracolo per tutti i pazienti che richiedono una combinazione di trapianti complessi come il mio.

Questo miracolo è molto costoso (stimato in $ 1 milione), ho bisogno di aiuto per finanziarlo. Per questo i miei parenti e amici stanno contemporaneamente lanciando la raccolta dei fondi in giro per il mondo per raggiungere una parte di questa somma, che consentirà di iniziare il processo di cura, un primo passo decisivo senza il quale nulla è possibile.

Per favore, condividi la mia storia e dona 10 euro, 20 euro o qualunque cosa pensi sia ragionevole. Ti devo la mia vita.

Instructions for stock contributions

INSTRUCTIONS FOR STOCK CONTRIBUTIONS 

Thank you for your interest and support of Mikhael’s case through stock donations to the National Foundation for Transplants. Below are the instructions you will need to provide to your transfer agent. After making the transfer, it is important to notify Tim Carlew at the National  Foundation for Transplants Accounting department by email at tcarlew@transplants.org or fax (901) 684-1128.  This will ensure there are no issues with the transfer and processing can occur quickly.  

Transfer Agent Instructions 

DTC#: 0164 Code 40 

Client Name: National Foundation for Transplants 

3249 W. Sarazens Circle, Suite 100 

Memphis, TN 38125 

P: (901) 684-6681, or (800) 489-3863 

F: (901) 684-1128 

Client A/C: 1174-6521 

Custodian: Charles Schwab, Inc. 

Contact: Ren Epperly, or Hallie Peyton 

1715 Aaron Brenner Drive, Suite 301 

Memphis, TN 38120 

P: (901) 758-9006, or (888) 326-8554 

F: (901) 758-9007 

INFORMATION TO INCLUDE WITH THE TRANSFER:

1) Donor’s name, address, phone number, and recognition name 

Donation in honor of Mikhael Krotov

Fund address: 2268 Sun Mor Ave, Mountain View CA 94040

Phone number: +1-781-249-8778

2) State/Organ Fund (state of the organ recipient’s primary residence and organ type needed) 

State fund incorporated in California 

Organ type: Double lung and bone marrow

3) If applicable, patient honorarium/memorial (name of patient being honored or remembered) 

IMPORTANT: Please do not forget. In addition to providing the above information to the transfer agent, you should send an email or fax to Tim Carlew (tcarlew@transplants.org, fax (901) 684-1128) with a copy of the above information. This will allow accounting to monitor the agency’s investment account to insure  the proper fund is credited. Please remember that stock donations take time to be processed, about 1-2 weeks.

Thank you once again, for your gift to the National Foundation for Transplants and for supporting Mikhael’s fight for his health! 

Feel free to email us if you have any questions, savemikhaelkrotov@gmail.com.