RARE GENETIC DISEASE NEEDS 25,140AED TO START THE TREATMENT

By JEAN LUMEN

Expired

KALEM WHO HAVE SPINAL MUSCULAR ATHROPY( A GENETIC DISEASE) NEEDS 25,140 AED TO START HIS TREATMENT, THE MORE WE LOSE TIME/DAYS THE LOWER HIS CHANCES TO BE MINIMIZE HIS SYMPTOMS.

Health and Nutrition

AED 25,140.00

About the Cause

Poor health and nutrition negatively affect children’s school attendance and ability to learn. We implement school feeding programs that look for alternative ways to ensure sustainable supply of nutritious foods to school children and young people in urban and marginalized areas. 

In addition, contaminated water and poor sanitation are big factors that result in the death of children worldwide. In our programs, we always include what is called WASH which means Water, Sanitation & Hygiene. This is done through the design and construction of child-friendly and gender sensitive facilities for sanitation, such as latrines and hand-washing stations. We also provide clean water supply by building water wells and raise awareness about the importance of sanitation and hygiene.
 

My Story

Please help my son. Kalem is now 3 years old and still cannot walk or stand. He cant crawl nor have strength to lift small things in hand. He easily gets tired if he is holding something even with light toys. He cant even lift his body to be in a sitting position. He has no strength at all. But he can sit alone with assistance on the back if we put pillows. His back is also starting to curve and we are very worried for his health. We lift him every time when moving from one place to another but he is a smart child and a very cheerful one. His doctor is also very concerned and is pushing to get the treatment done as soon as possible as the damage day by day with this body cannot be undone. The earlier the treatment, the more we can prevent further damages. We are currently in Dubai and our financial status is not enough to support our child needs specially for the treatment. We applied to charity and were able to get 1 year free spinraza but the hospital fee must be paid which cost 25,140 AED. Without the money, we are unable to proceed with the infusion of the treatment to his spine as we must first pay the admission fee. This 25,140 AED cost is good also for 1 year during the process of infusions.

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