Help Auliya to Fight Against a Rare Brain Disease

Assalamualaikum warahmatullah

My name is Khanza. I created this fundraising campaign to help a mother with a 6 years-old little girl 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.

The family has brought her to the hospital and the doctors could not find out what was happening to her until she had more seizures non-stop and went coma at 5 years old. Auliya has had hospitalised for a long time enough, but nothing changed from her, and the family decided to bring her to another hospital.

After they moved and Auliya got examined, the doctor told them 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 sample was sent to Germany to be examined. And after some time, they 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 NCL2 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 NCL2 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 kind of milk through a tube. It is called as KetoCal, and it is also expensive. At first, the family could buy for her, but now they are not able anymore. The milk costs for £35,60 more or less per can. And in a month, she actually has to drink for around 15 cans of it. Since months ago, they can not buy the milk anymore so Auliya drinks a common formula milk. And it worsens the seizures (the example photo of KetoCal is attached in the gallery).

Auliya still needs further treatments, medicines, milks that the family can no longer afford them all, subhanallah.

The mother has tried 2 times to fundraise before and those were not going well. She cannot reach the goals. And now the donations they received before is almost finished, since it used for the treatments. And i want to help the mother for Auliya.

My dear sisters and brothers, the family almost lose their hopes. And they truly need our help for the little girl, Auliya. So please, with all of my humbleness and respect, lets we help Auliya to fight against her disease. Help Auliya as our little sister in Islam, part of this ummah to heal. Just like the Quran says,

"Help each other in righteousness and piety, but do not help one another in sin and transgression."
{Quran, 5:2}

"Who is he that will loan to Allah a beautiful loan which Allah will double unto his credit and multiply it many times?"
{Quran, 2:245}

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)”
{Muslim}

Our donations will be our sadaqah. And sadaqah is a 'guaranteed' investment in akhirah, 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. Ameen allahumma ameen. Jazakallah khayr everyone and thank you so much in advance. Lets we help and support each other as one ummah for the sake of Allah.

Assalamualaikum warahmatullah
Khanza