Alhamdulillah, a new collaboration has been formed and is being carried out between SMA Malaysia and the Mukmin Pro App in raising awareness and community concern for the children of SMA Fighters who are fighting for their lives and continue to survive in the face of health issues due to Spinal Muscular Atrophy.
The SMAM - Mukmin Pro App collaboration is a fundraising program for SMA patients (SMA Fighters) who are in dire need of financial assistance and moral support more systematically through a Mukmin Pro App that can be downloaded by anyone. Mukmin Pro App is a contemporary and comprehensive Muslim lifestyle concept application that is a project under the management of famous actors, celebrities, and entrepreneurs, Fattah Amin and Nur Fazura. This application also allows the community to lend a helping hand by donating funds to those in need directly, more easily, and quickly.
Download Mukmin Pro App via the following link: https://play.google.com/store/apps/details?id=com.mukminprosolution.mukminpro
It is well known that the health of SMA Fighters is quite vulnerable and easily affected, especially lung infections due to weather factors and any germ-borne infections. It has become a practice for the SMAM WhatsApp group to become a platform for sharing experiences and the latest developments of SMA Fighters among the extended family of SMA Malaysia. Until now, many SMA children are being treated in hospitals and PICUs due to various symptoms of health disorders. They are in alarming need of various types of medical aids and some of them have to rent aid machines such as Bipap, Cough Assist, and others. Even special nutritional ingredients such as special formula milk, and carborane; supportive medications such as antibiotics, salbutamol, and saline nebulizer; equipment parts such as a suction catheter, bipap mask, feeding tube, syringe and many more also cost plenty.
The specific therapies that have been produced by scientists give new light to the SMA community around the world including in Malaysia. Now three types of therapy have reached Malaysia. The specific therapy is:
1) Ridisplam (Cost: 1 bottle = RM 40K for an estimated use of 1 month). This medicine needs to be taken every day for life.
2) Spinraza (Cost: Estimated hundreds of thousands of ringgit for 6 doses for the first year followed by 3 doses a year for the following years). This medicine is given to the patient in the form of an injection in the spinal cord and needs to be taken for life.
3) Zolgensma (Cost: Estimated USD2.1 million or RM8.9 million for one dose of spinal cord injection). This therapy is given once in a lifetime.
The challenge of financing the high cost of therapy - this therapy cannot be afforded by any family of SMA patients. There is still no help funding the cost of these therapies from the government even though the budget has been presented and approved in Parliament and started to be channeled into the Rare Disease treatment group where SMA is part of rare diseases. Therefore, this community donation fund collection program is very essential and through the user-friendly application developed by the Mukmin Pro App Team, it is hoped that information can be disseminated to the entire community so that it gains more coverage and speed up the collection of funds for the benefit of SMA patients. For the first session of the program, six SMA patients were selected as follows:
1) Baby Wan Muhammad Naail
2) Baby Muhammad Syafi Rizqi
3) Baby Muhammad Athif Fahri
4) Baby Nur Aileen Alfanisa https://app.herepay.org/smamalaysia/aileenalfanisaqalesya
5) Baby Muhammad Harraz Waiz https://app.herepay.org/smamalaysia/harrazwaiz
6) Baby Siti Nurkhadijah Rania https://app.herepay.org/smamalaysia/sitinurkhadijahrania
Hopefully, with the donations channeled by the Malaysian community with full concern and love, this can help ease the pain in the lives of SMA children who are being treated and their families, give them new hope, and be able to improve the health of SMA children better. May God bless the benefactors and may God grant healing to all SMA Fighters. InshaAllah Amen.
