My name is Khanza. I created this fundraising campaign to help my 6 year-old sister to fight against a rare brain disease.
Her name is Auliya. She is 6 years old little girl.
When she was born, until she turned to 3 years old, Auliya was a very cheerful and active little girl. But everything has changed since she experienced seizures very often. She weakened, she fell off often times whenever she walked around until Auliya is not able to stand up anymore. And she never goes to school anymore since then.
We have brought her to the hospital and the doctors could not find out what was happening to her until she had seizures non-stop and went coma at 5 years old. Auliya had hospitalized for a long time enough in the hospital, but nothing changed from her, and the family decided to move her to another hospital.
After we moved and Auliya got examined, the doctor told us that she had Intractable Epilepsy.
Intractable Epilepsy is a seizure disorder in which a patient's seizures fail to come under control with treatment. But because it was still uncertain, her blood was sent to Germany to be examined. And after some time, we finally received the result. Auliya is suffering from Neuronal Ceroid Lipofuscinosis type 2 (NCL2).
NCL2 is a rare autosomal recessive lysosomal storage disease and is caused by deficiency of the Enzyme Tripeptidyl Peptidase 1 (TPP1), leading to the lysosomal accumulation of an autofluorescent lipopigment with subsequent neuronal degeneration of the hippocampus, cortical interneurons, cerebellum, and thalamocortical neurons. In short, her brain is damaged due to an enzyme deficiency.
Sisters and brothers, sadly the medicine for NCL2 is extremely expensive. It is Brineura. Brineura (Cerliponase Alfa) is the only enzyme replacement therapy that helps treat CLN2 disease, a common form of Batten disease. Brineura is approved to slow loss of ability to walk or crawl (ambulation) in symptomatic pediatric patients 3 years of age and older with CLN2 disease. Brineura is a prescription medication used to slow loss of ability to walk or crawl (ambulation) in symptomatic pediatric patients 3 years of age and older with late infantile Neuronal Ceroid Lipofuscinosis type 2 (NCL2), also known as Tripeptidyl Peptidase 1 (TPP1) deficiency (the example photo of Brineura is attached in the gallery). Brineura will be injected through her brain fluid in order to replace the lack of enzymes in Auliya's brain.
The other problem is Auliya musts drink special milk through a tube. It is called as KetoCal, and it is also expensive. At the first, we could buy for her, but now we can not anymore. The milk costs for £35,60 more or less. And in a month, she has to drink for 15 cans of it. Since 2 months ago, we can not buy the milk anymore so Auliya drinks common formula milk. And this caused her seizures get worst (the example photo of KetoCal is attached in the gallery).
Auliya's hospital bill is reached up to £37,000. Since we can not pay it off, we brought Auliya back to home and we signed a repayment-agreement that we will pay it off, even though Auliya still needs further treatments. However, we still have to buy medicines and other needs for her which are very expensive and by the will of Allah we can not afford no more, subhanallah.
My dear sisters and brothers, we almost lose our hopes. And we truly need your help for our little girl. So please, with all of our humbleness, help us and Auliya to fight against her disease. Help Auliya as your little sister in Islam, part of this ummah to heal. Just like in the Quran says,
"Help each other in righteousness and piety, but do not help one another in sin and transgression."
"Who is he that will loan to Allah a beautiful loan which Allah will double unto his credit and multiply it many times?"
Also in a hadith says,
“When a man dies, his acts come to an end, but three, recurring charity, or knowledge (by which people) benefit, or a pious son, who prays for him (for the deceased)”
And your donations will be your sadaqah in Akhirah. And sadaqah is a 'guaranteed' investment, subhanallah.
Please donate any amounts that you are capable of and spread this campaign to all of your families and friends to make it spread wider, inshallah.
May Allah reward you all abundantly, protect you from evils and harms and grant you happiness in this world and Jannah al Firdaws the next. Ameen allahumma ameen. Jazakumullah khayran everyone and thank you so much in advance.
(We have a video of Auliya's condition, but i can not upload it since this site only supports links from mainstream services such as YouTube and Vimeo).