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LENKA WITH NF1 FIGHTS WITH BRAIN TUMOR

LENKA WITH NF1 FIGHTS WITH BRAIN TUMOR

Lenka1

 

 

Lenka was born on December 9, 2012, at 36 week of pregnancy. Up until the third year of life she developed properly. Since birth it was suspected that she has genetic disease neurofibromatosis type 1 because she has “cafe au lait” spots typical of the disease. We were under constant care of neurologist, ophthalmologist, dermatologist and orthopedist. When Lenka was 3 years old she began to have symptoms that worried us a lot. She began to talk very vaguely, walked with her mouth open, she was more sleepy, and after a while there was a disturbance of balance and facial asymmetry. We visited many doctors who as a cause of problems pointed out enlarged third almond. A week after the almond removal disturbing symptoms continued to intensify, so we went to hospital. She had MRI.

DIAGNOSIS – NOT-OPERATIVE BRAIN TUMOR  occupying optic nerves, extending up to the brainstem.

That day will not be forgotten for the rest of our lives, the whole world and our lives have fallen… a few weeks ago our little Lenka was a healthy child and now she has to fight for her life. Doctors asked us for permission to make a very risky biopsy from the brainstem.

The biopsy was carried out on the next day and the material for histopathological examination was taken.

RESULT – TUMOR – PILOCYTIC ASTROCYTOMA WHO GRADE ILanka2

After the surgery Lenka stopped walking and talking for about almost two months, she had a right-sided paresis, had severe swallowing problems, and had epilepsy.

We decided on oncological treatment in Warsaw. We have been there since mid-May 2016. Further MRIs, which are performed during chemotherapy, show little improvement, but the tumor is still very large. We will have many months of chemotherapy.

The tumor irreversibly damaged her optic nerves causing serious visual problems. Lenka constantly needs rehabilitation because she has all the time reduced muscle tone, imbalances and paresis.

Because of cancer, NF1 and epilepsy Lenka must be under care of an oncologist, neurologist, neurosurgeon, cardiologist, ophthalmologist, endocrinologist, orthopedist. On her body there are further changes associated with NF1 – neurofibroma, which must also be constantly monitored by doctors.

Medical consultations, rehabilitation, medicines and supplements for Lenka are very expensive. We would also like to consult our daughter in foreign clinics which also involves high expenses. Please support us because we have to do everything possible to help our beloved daughter in this difficult fight.

Lenka’s parents

Ewa and Krystian Szkop

 

You can help Lenka by making payments on the account:Lenka 3

Fundacja Pomocy Dzieciom i Osobom Chorym “Kawałek Nieba”

PL31109028350000000121731374

swift code: WBKPPLPP

Bank Zachodni WBK

Title: “875 Help for Lenka Szkop”

 

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