Hello!
I am writing out of desperation and hopelessness. My daughter
Nadezhda was born in 1991. When she was only 7 months old, she
got sick. She had fever and we called ambulance. Our daughter was
taken to infectious diseases hospital, where she had a blood
test that showed hemoglobin count of 33. She was diagnosed with
hypoplastic anemia (Diamond-Blackfan anemia).
Since that moment, every two months Nadezhda needed blood transfusions.
She is now 18.
By now, she had graduated form high school with good grades.
She wanted to enroll into a medical school, but she is unable
to do it due to her illness.
We hoped that with time, the disease will retreat and Nadya
will get well, but the miracle did not happen. The doctors from
Krasnodar referred Nadya for a consultation in St. Petersburg.
We came for tests and it turned out that due to numerous blood
transfusions, Nadya accumulated excess iron in her body – as
high as 7,500, while the norm is 350. She was prescribed therapy
with Exjade, but it was not effective. In six months, the blood
test showed that iron levels increased to 13,000.
We were then referred for bone marrow transplantation at
R. Gorbacheva Pediatric Hematology and Transplantology Institute
where we are currently on treatment.
Since my daughter has to stay at the hospital very often, I
do not work. My husband is the only earner, and his salary is modest.
We have no one to help us. We lack money for medications and
for apartment rent. If you could help us with anything,
I will be enormously grateful.
Update as of January 18, 2010.
On January 14th Nadezhda had bone marrow transplantation.
She feels rather well, except for high temperature and nausea.
Update as of January 25, 2010.
It has been 11 days after transplantation. Nadya is now
in cytopenia, but feels reasonably well, except for nausea.
Update as of February 10, 2010.
Nadia feels better and she is no longer nauseous.
Unfortunately, she was diagnosed with aspergillosis
and needs 400 mg of Vfend a day.
Update as of March 3, 2010.
Nadia was found to have an infection and was prescribed Amoxiclav.
She feels rather well, but lost her appetite and suffers from nausea.
Nadia still needs Vfend.
Update as of March 14, 2010.
Nadia recovered after transplantation and was discharged for outpatient monitoring.
Update as of April 3, 2010.
Nadia had planned surgery to remove her spleen.
She is already transferred out of intensive care unit and today
she got up for the first time.
Update as of April 18, 2010.
Nadia died last night, at 7 am. She had an
extensive stroke in the brain stem and passed away instantly.
