Arkhip Naimushin

4.5 years old, Kirov
Diagnosis: Primary immunodeficiency. Wiskott-Aldrich syndrome. Persistent cytomegalovirus syndrome.
Died on February 12, 2013.
THANK YOU EVERYONE from Arkhip’s mom and dad, the doctors, and all of us! On August 23 Arkhip and his parents flew to Germany to be treated at the University Clinic of Freiburg. Thank you to everyone who has supported Arkhip and his parents for the last few months with medication and prayers! With your help we even managed to overcome the bureaucracy of government institutions! All the updates on Apkhip will be posted on our Facebook and Vkontakte pages.

Story

 

Arkhip’s story

Arkhip is almost five. Kids like this age; they look at the palm of their hand counting the fingers and think that they’re all grown up. This isn’t what’s on Arkhip’s mind.

When he was six months old, Arkhip was diagnosed with a terrible disease – primary immunodeficiency, Wiskott-Aldrich syndrome. Since he was seven months old, he has been under medical supervision at the Clinical Immunology Department of the Russian Children’s Clinical Hospital (RCCH). At eight months, his spleen had to be surgically removed.

Here’s what Arkhip’s mom, Tatiana Naimushina, tells us: “He had to start wearing glasses when he was one. We got used to our monthly immunoglobulin IVs. Taking handfuls of pills every morning and evening became a common thing. All drugs available in our country only gave short-term results. I had to leave my job to completely devote myself to my son. I did everything to make sure my son grew up to his full potential and enjoyed his life and the beauty of this world just like millions of other healthy kids. Unfortunately, none of this worked out.”

Recently, Arkhip was urgently hospitalized in the Russian Children’s Clinical Hospital (RCCH). His eyesight rapidly deteriorated. The doctors diagnosed him with progressive retinal and cranial atrophy. Arkhip lost almost all of his vision. The RCCH doctors’ council made a decision to send the boy for an urgent bone marrow transplantation surgery at a foreign hospital. The boy’s chances for a successful recovery are much higher at a foreign hospital than in a Russian one. The charity quota of the Russian Ministry of Health allows for this to happen. As it turned out in Arkhip’s case, however, it’s possible only on paper.

In May 2012, Arkhip’s mom submitted a request to include her son in the Ministry’s quota so that he could have a bone marrow transplant surgery in Spedali Civili di Brescia – an Italian hospital that has vast experience in operating on patients with complications similar to Arkhip’s. The following June, the boy received an approval from the council at the Ministry of Health. Unfortunately, the council disregarded the opinion of the experts at the Russian Children’s Clinical Hospital and the Federal Research and Clinical Center, and Arkhip was selected to be sent to a different hospital, with less of the required specialization. Arkhip’s parents and doctors made multiple attempts to appeal to the Ministry of Health to change their decision. Eventually Tatiana, Arkhip’s mom, received a response from the Ministry that said that any attempts to revise their decision would be considered as the parents’ refusal from a government-funded favor to their son.

As it turned out, the Ministry’s inattentive approach in making its decisions was not the only trouble Arkhip would have. According to protocol, it takes more than three months to put together all the papers necessary to send this little guy to treatment. Multiple requests (complete with reports on Arkhip’s rapidly deteriorating health from the Clinical Immunology Department at the RCCH) were sent to the Ministry of Health. In July 2012, the Ministry finally expressed willingness to prepare all the necessary papers within 2 weeks. According to this, Arkhip could start getting ready for his trip around August 8, 2012. What followed was more than a bad surprise for the Naimushin family (if you can call this emotion a surprise): two days before the long-awaited date it became clear from a phone conversation with the Ministry’s representative that the contract with the hospital hadn’t been signed yet, and all the papers were still being revised. No approximate date of departure was set. Olga Prokophyeva, Apkhip’s case coordinator at the Ministry of Health, brought to the parents’ attention the fact that, according to protocol, the Ministry reserves 92 days to make its decision. She asked the parents not to worry too much: “The doctors are watching your child anyway, right?”

Arkip’s health is getting worse by the day. The boy lost his vision completely. The most recent tests showed that the virus had affected all of his organs, so no medicine is giving him relief anymore. How can we explain to the bureaucrats what a boy in his condition feels? He is locked up in a hospital environment 24/7 with IVs constantly attached to him. In the last 2 months he received general anesthesia 4 times. He’s constantly suffering from pain and fever. And the most important question is: How can we ask Arkhip not to die and to hold on just a little bit longer?

Here’s what has already been done:

May 31, 2012 prescription drug Foxair was purchased – 40 units for 8058.31 Euro;

August 12, 2011 prescription drug NeoCytotect was purchased – 9 units for 90000 roubles ($ 3000 US);

October 25, 2010 NeoCytotect – 9 units for 103352.04 roubles ($ 3445 US);

June 16, 2010 NeoCytotect was purchased at the Clinical Immunology Department of the RCCH – 4 units for 42531.72 roubles ($ 1417 US);

June 7, 2010 NeoCytotect was purchased at the Clinical Immunology Department of the RCCH – 3 units for 34450.68 roubles ($ 1148 US);

January 31, 2010 prescription drug Cymeven was purchased at the Clinical Immunology Department of the RCCH – 10 units for 15680 roubles ($ 522 US);

December 4, 2009 NeoCytotect was purchased at the Clinical Immunology Department of the RCCH – 4 units for 41273.56 roubles ($ 1375 US).