l'îlot calins

l'îlot calins

26/12/2019 21:49

Urgent life‑saving intervention for Marwan

€ 124,440 on €125,000
100%
4.5k
1.4k
49.9k

This fundraising does not accept donations anymore.

l'îlot calins

l'îlot calins

26/12/2019 21:49
€ 124,440 on €125,000
100%
4.5k
1.4k
49.9k

This fundraising does not accept donations anymore.

Urgent life‑saving intervention for Marwan

Marwan, 18 months old, originally from and living in LARACHE, MOROCCO, urgently needs a bone marrow transplant.

His mother, helped by a sister who has been deeply affected by the boy’s illness, contacted us as a last resort, not knowing where else to turn... they have only found closed doors.



The child Marwan suffers from a severe disease: mucopolysaccharidosis type 1 (MPS1) is a rare lysosomal storage disorder belonging to the group of mucopolysaccharidoses. There are 3 forms, with very variable severity: Hurler syndrome for the most severe form, Scheie syndrome for the mildest form, and Hurler‑Scheie syndrome which has an intermediate phenotype.



The consequences of the disease are terrible: Marwan has a hernia.

The boy’s testicles have become greatly enlarged, which obviously causes him pain.



Mucopolysaccharidoses (MPS) are genetic degenerative lysosomal disorders due to an enzyme deficiency that leads to accumulation of mucopolysaccharides in various tissues.



THE INGUINAL HERNIA SUFFERED BY MARWAN IS A CONSEQUENCE OF HIS GENETIC DISEASE





Doctors emphasize that the transplant must be performed before the age of 24 months to optimize the chances of success and limit irreversible complications.

MPS1 can cause neurological, cardiac and pulmonary involvement, as well as hearing problems.



A symptomatic treatment must be provided by a multidisciplinary team. Hematopoietic stem cell transplantation (HSCT) has shown good results in some patients. Enzyme replacement therapy (laronidase) was granted European marketing authorization as an orphan drug in 2003. All patients, including those who have not received HSCT or who have experienced graft rejection, can benefit from laronidase therapy.



Administered by weekly infusions, it improves lung function and joint mobility. Early treatment slows disease progression but has no effect on neurological lesions.



Marwan’s family comes from a disadvantaged background and does not have the financial means to cover the costs necessary for proper care.



The family’s socio‑economic conditions are precarious....

This is why we appeal to all the hearts that read this call for help.



If we raise the funds, Marwan will be cared for by the Acibadem group located in Istanbul.

We have funded many successful procedures at this facility and thank all the people who helped us treat our children.





The diagnosis was revealed by a urine test showing a high level of glycosaminoglycans, and confirmed by measuring the enzymatic activity of alpha‑L‑iduronidase.



We therefore count on your solidarity. Fees include bank charges and PayPal fees. In the event of death, the collection will be donated to another child.

DO NOT UNDERESTIMATE A SHARE OR EVEN A DONATION OF 1 EURO!



IF THOUSANDS OF YOU DO THIS, YOU WILL END THE ORDEAL OF MARWAN AND HIS FAMILY. THANK YOU!

Please indicate the patient’s name in the payment reference for any transfer to the association's bank account:



Thanks to all benefactors

You can contact the association via our Facebook page: https://www.facebook.com/lilotcalinsdessoeursetfreresdecoeur/ or directly by email: [email protected]

Whatever the amount, everyone can contribute to this fundraiser. No need to create an account or sign up, it’s quick and payments are 100% secure.

If you cannot contribute financially, share this fundraiser as widely as possible. THANK YOU!

**

News (12)

16/07/2026 13:52
16/07/2026 13:52
16/07/2026 13:52
16/07/2026 13:52
16/07/2026 13:52

Donors (4502)

Anonymous
Anonymous
| + €40
01/11/2021 04:44

Qu allah le guérisse protege bénisse des douaas pour m père lahcen malade

Anonymous
Anonymous
| + €25
05/05/2021 01:10
Anonymous
Anonymous
| + €5
14/03/2021 01:34
Anonymous
Anonymous
| + €50
02/02/2021 19:15

Que dieu le guérisse inchallah.

Khalled Benjar
Khalled Benjar
| Private
24/01/2021 22:47

Bi Chifa inch'Allah

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