Nemaline Myopathy Support Group

Fundraising

Majeda Qasem's page

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Majeda Qasem - West Bank, Palestinian Authority - June, 2008

majedaMajeda Qasem is a sixteen-month old baby who has a rare muscle disease called nemaline myopathy. She is totally dependent on a ventilator for breathing and is fed directly to her stomach via a gastronomy tube since her muscles are too weak to enable her to independently swallow. She was born in the West Bank Palestinian town of Tulkarem and has been in the local al-Zakat Hospital for the past fourteen months of her life. She also spent two months in an Israeli hospital, where she was diagnosed and intubated. This hospital in Tulkarem has the only pediatric ventilator available in the area and has enabled Majeda to receive treatment despite the fact that her family cannot pay for it. The hospital does not have a pediatric ICU, and Majeda was recently moved to the adult Intensive Care Unit of the hospital, clearly not appropriate either for her age or for her condition.

majedaAlthough the hospital staff are sympathetic to her condition, they say that they will not be able to fund her hospital stay much longer. However, unless she is connected to a respirator twenty-four hours a day, Majeda cannot survive.





majedaIt doesn't have to be like this. If Majeda had a ventilator, she could go home. The cost for two vents (one as a backup) cost around $14,000 plus extra equipment needed. She will need intensive treatments for the rest of her life, such as physiotherapy and feeding therapy and her parents will need guidance in how to take care of her at home - but it IS possible. As you can see from the photos, Majeda's a beautiful, alert little baby who deserves more than to be lying on her back in a hospital bed.



Update

November 6, 2008

majedaTo everyone who donated, sent messages, encouraged and helped get this equipment to Majeda, a huge thank you!
With your help, Majeda now has two respirators, an oxygen concentrator, a pulse oximeter and suction. This would never have happened without you. Majeda's mother and father are so grateful to this group and want you all to know how important it is too, for them be able to begin the process of getting Majeda home, where she belongs.

Special, special thanks to Emmett Fuerst who made a huge effort to raise money for Majeda, to Marc Guillet for being instrumental in raising money, and, of course, to Dave, who set up the web page for Majeda and helped push this through from the beginning.

Majeda is the real star - she can smile and wave her hands and, as you can see from the photos, is a sweetheart.

Joanna

Update

Sunday, November 24, 2013

majedaLittle Majeda passed away last week.