Gugolko Egor

1 year old, Kurgan region
Diagnosis: primary immunodeficiency, chronic granulomatous disease
Necessary drugs - Vifend and Tavanic cost 51 500 rub.

Story

History of the child

21 January 2016:

Egor is ready to go home. Egor is ready to be discharged from hospital, but he has to take medicine at home because the therapy mustn't be interrupted. For the first month at home Egor needs: Vfend (tabs) 200 mg #14 – 2 packs, Tavanic (tabs) 250 mg #10 – 3 packs. Total cost 51 500 rub.

30 November 2015:

Nowadays Egor is on his planned hospitalization in Russian Children's Clinical Hospital (RCCH). The transplantation donor is not found yet. Egor feels worse and he needs antifungal agent Ampholip that is not available in this hospital. For the teraphy he needs 15 bottles of Ampholip. Total cost is 138 105 rub.

31 August 2015

While Egor is waiting for the bone marrow transplantation, he  is discharged from hospital for some period of time. He needs medicines:  Rifampicinum and Tavanic. Total cost is 24660 rub.

This is what we wrote earlier:

16 July 2015 he had his first birthday and celebrated it in a hospital ward. Most of the first things happened to him in hospital.

First words. “He started to repeat after me ‘mom’, ‘dad’, ‘granny’. "He tries hard.” – says Egor's mother Varvara.

First steps. Egor's first steps were taken in the hospital corridor, holding his mom's hand. Egor walks not very well yet. “We arrived at hospital in May. Those days he started trying to walk, so real steps were done here” -  says Varvara.

First teeth. At this time Egor has 6 teeth. Varvara says that they are growing very fast, it hurts, Egor is crying, and the temperarure is rising.  “But we cope with it  using special gel. 6 teeth is not a joke. He is already a big man” – his mother laughs.

Egor is one year old now. Half year ago the doctors of Russian Children's Clinical Hospital (RCCH) determined that his immune system is compromised.

Gene malfunction occurred and Egor can not protect himself from malicious viruses and infections. The boy has a primary immunodeficiency, chronic granulomatous disease (CGD). Children with CGD can not resist mainly a fungal disease that affects lungs. That's why Egor took his in the hospital corridor, and and Varvara heard his first words in the hospital ward.

 

Nowadays RCCH doctors are trying to cope with an abscess in the liver and an infection that is now developing in the body.

Egor is waiting for bone marrow transplantation (BMT).

Hematopoietic donor cells will be transfused to the boy, then the transplant  will be integrated to the organism and compensate the failure.

If the bone marrow is doesn't reject, the protection system in his body will be recovered. He will have to visit hospital, but very rarely. Probably he will need some medicines but much more less than now.

This means that later in his life there will be a lot of "first things". The first class, for example, the first book that he will read. Or the first school friend. As time passes, the memories remain. And those memories won't be associated with hospital but simply with life.

In order to cope with grafting, Egor's body must be strong and prepared. So now we need to cope with the infection and the abscess in the liver. The doctors of our hospital prescribedthe boy the drug therapy "Zyvox." In the hospital pharmacy, where Egor is staying now the drug is not available.

 

What has been done

What has been done:

December 25, 2015 - Thanks to MTS, "Allen & Overy Legal Services”. 25 packages of Ampholip 5 mg / ml, 10 ml №1 were purchased - total amount -  230 175,00 rubles.
 
December 22, 2015 - thanks to the MTS drug Ampholip 5 mg / ml, 10 ml №1 – was purchased 15 packages - total amount 138 105,00 rubles.
November 26, 2015 – 1 package of needles for Surekan port system 22 G 12 mm №15 was purchased – total amount 5 400,00 rub.
October 22, 2015 - 2 packages of Vfend 200 mg №14 – total amount 47 600.00 rubles.
September 24, 2015 - 15 pieces of Tavanic - total amount 22 800.00 rubles.
September 14, 2015 - 3 pack. of Rifampicin amp. 150 mg №10 – total amount1 860,00 rubles
22 July 2015 - 3 packages of Zyvox packs of 2 mg/ml, 100 ml №10 – total amount 20 076.00 rubles