Monday, October 6

Naji Needs Your Help

Naji is 5 years old, almost 6.
He lives in Jaffa, with his mother and sister.

He should go to kindergarten, but the only kindergarten willing to accept him is located on the premises of the Asaf HaRofeh Hospital and demands an emergency unit nurse to be present at Naji's side at all hours. The Ministry of Health is unwilling to pay for this and The Ministry of Education do not think they are responsible either., so Naji is at home.

Naji has no wheelchair although he needs one.
Naji has no leg supports, although he needs them, urgently.
Naji does not receive physiotherapy, although he needs it.
Nor does Naji receive speech therapy, which he also needs.
Naji needs much help. but he doesn't get it.

Naji is connected to a oxygen supply machine pushing air into his lungs 24 hours a day and needs around-the-clock care. Naji is unable to breathe for himself, because of a rare disorder, called "Pompe Disease"*. His very dedicated mother, Intisar, takes care of him. Every 20 minutes Naji needs to be suctioned in order to clean his airway. At night Naji needs to be turned over as he cannot easily do so himself. Intisar is always there for him, but she has little energy left.
His younger brother died from the same disease a year ago. The death of Naji's brother allowed the medical staff to understand the nature of Naji's problem. Naji is receiving medicine to stop the advancing damage, but much damage has been done.
Naji wants to live.

Naji is his real name and the child in the picture is him. I publish this picture on his mother's full request to do so, as Naji needs help and is not receiving it.

His mother is fighting for Naji's rights, but the bureaucracy is hell.

Oh and something else, Naji, who has serious breathing problems, is living in a flat surrounded by a sewage swamp. The house owner (public housing company Halamish) and the Tel Aviv Jaffa Municipality are fighting over whose responsibility it is to pay for the repair. In the mean time Naji cannot leave his home because of the swamp, yet cannot bear to stay home because of the stink.

Naji NEEDS help urgently, yours.

This article may be copied and spread around, maybe someone will wake up.

* Pompe disease is a rare (estimated at 1 in every 40,000 births), inherited and often fatal disorder that disables the heart and muscles. It is caused by mutations in a gene that makes an enzyme called alpha-glucosidase (GAA). Normally, the body uses GAA to break down glycogen, a stored form of sugar used for energy. But in Pompe disease, mutations in the GAA gene reduce or completely eliminate this essential enzyme. Excessive amounts of glycogen accumulate everywhere in the body, but the cells of the heart and skeletal muscles are the most seriously affected. Researchers have identified up to 70 different mutations in the GAA gene that cause the symptoms of Pompe disease, which can vary widely in terms of age of onset and severity. The severity of the disease and the age of onset are related to the degree of enzyme deficiency.

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