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Can you help? . Imagine for a moment…. and almost every day for the past year and a half you were travelling 40 minutes to Randwick not knowing if your son would be alive to see you one more day. Just imagine your son was very sick (May Allah keep him healthy ameen).Before reading…. This is happening to one family right now. But you are hoping and praying to Allah for him to be alive. What would you do? What would you think? How would you take it? Now imagine you have the ability to bring him home except… Except you do not have the ability to fulfil the requirements yourself to bring him home.

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After being seen by the specialists who examined him. Each letter in the word VACTERL stand for a particular organ or structure that is affected.Anal atresia C .Tracheoesophageal fistula E .Esophageal atresia R .Vertebral anomalies A .Limb defects For a patient to be diagnosed with VACTERL it is needed to have three or more defects detected from the list above. the Doctors offered to abort the child as his current situation was serious and complicated. Not knowing the full extent of his condition. They are: V . The parents decided to put their trust in Allah and continue with what Allah has blessed them with. Moustafa was born blue (not breathing) and was quickly intubated with life support and transported to Sydney Children’s Hospital at Randwick to the Children’s Intensive Care Unit (CICU). What is VACTERL? VACTERL is a non-random association of birth defects. . weighing 1. He was born at the Liverpool hospital on the 11th of January 2010.Cardiovascular anomalies T .Who is Moustafa Ali? Moustafa Ali is the 3rd child of Mahmoud Ali and Eman Raad. At delivery.814kg and 41cm long (very small baby).Renal (Kidney) and/or radial anomalies L . During his mother’s pregnancy the Doctors discovered from the first ultrasound some abnormal and unusual findings. they diagnosed little Moustafa with a rare condition called VACTERL.

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One kidney. Vascular ring repair. Only one lung (due to lung disease). Hernia operation. Complete rings instead of D rings in his airway. He has had several operations/procedures to repair his air way and to clear the obstructions that were in place.Moustafa’s Condition In Moustafa’s case. Hemi vertebrae to the left side of his spine. all organs and structures from the VACTERL list were affected. most of his operations did not return his problem to normal condition but instead they just prevented the problems from getting worse. Laparatomy And many more… . Stoma operation. 2 times for his Hickman line. Tracheostomy Jejunostomy for a feeding peg. Kink in his airway. Imperforate anus (no rectum). Short tendons in his neck and arm. Fused and collapsed ribs. Vascular ring. 2 undeveloped vertebrae in his back. the list of conditions include:               Being born 2 months premature. further complications had developed. Due to the way the syndrome affected him. some of the operations/procedures included:           2 operations on his airway. 6 missing ribs. One broncos entering the lung instead of three. Severe Spinal scoliosis. 8 bronchoscopes.

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the doctors offered the parents to switch off the ventilator and let what they call ‘nature take its course’. he had gone through so many operations but the doctors did not know what was causing him to have breathing attacks. During Moustafa’s time in hospital. It took almost 6 months before the doctors and surgeons realised that it was a series of problems that together would cause him to have his breathing attacks. but by the will of Allah he kept on pulling through time and time again. all of which would require him to be resuscitated by the doctors and nurses in the CICU. Moustafa would lose oxygen from his body causing him to need resuscitation. .Between Life and Death Ever since Moustafa was 3 days old the consultants and surgeons that over looked Moustafa’s case said that he would not live due to the way VACTERL had affected his body. On one occasion he was being resuscitated for over two and half hours. where the doctors were sure that he would not make it through. On a bad day Moustafa would have up to 15 breathing attacks. but with Allah’s help this was never an option for the parents and they did not agree with the doctors. Almost every week that went by.

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that it is a possibility that Moustafa may be able to be cared for at home.His slow improvement and future The Doctors at one stage said that little Moustafa would never go home and that if he was able to live. The hospital is funding over $200. However this now requires specialist equipment and intensive training to the parents. What is needed? At the very least there is a need for funding to bring Moustafa home as this requires a huge expense. and much more. All these are requirements that the family must fulfil before the hospital will discharge Moustafa. The doctors have remarked. the doctors where wrong as Moustafa’s body started to adapt to his condition and there were signs of improvement. a feeding pump. they have never dealt with a patient like Moustafa before. See the cost break down on the next page for further detail… . It was a one year process of planning and preparing the possibility of sending Moustafa home. the ICU would be his home. suction machine. The hospital then concluded after careful monitoring and consultation with the best staff and doctors. both to the hospital and on the family. However by the will of Allah. customised pram or wheelchair and other day-to-day essentials and equipment to meet his needs. However. a paediatric hospital bed. 3 tracheotomy devices. which includes 2 ventilators. the extra ongoing cost of medical consumables. consumables for the medical machines.000 dollars worth of medical equipment. the expenses which the family is required to cover (which are not supported by the hospital or government agencies) include: A specially customised van.

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dressings. it is a big burden on the family and one wage would not be able to sustain all his needs… . $55. the hospital has informed the parents that the extra medical consumables may be needed on their expense.set up (wheel chair modification)* Infant Hospital bed Medical trolley On-going costs** Medical furnishings Ventilator trolley Feeding pole QTY 1 1 1 1 ongoing 1 1 1 Cost Approx.000 *medications. then it is upon the family to purchase more.000 $7. etc Family’s costs Name Van Van.000 Nurses and Carers 8hrs per day Yearly $140.000 yearly Greater than $30.500 $900 $10. oxygen. As we can see. feeding tubes. Example: The hospital supplies only a standard amount of certain medical consumables. but the majority of the funds are upon the family to organise. as the hospital only supplies a certain amount each year.000-80.000 $5. Because of Moustafa’s complex condition. colostomy bags.000 – 100.000 yearly $700-1000 $800 $300 Qty 2 1 1 3 per year 1 ongoing 1 * The hospital may fund some minor costs.000 $3.000 $3.000-20. $50.Breakdown of the costs Hospital costs Name Ventilator Suction Machine Feeding Pump Custom tracheostomy Resuscitation bag Medical consumables* House fittings Cost Approx. tracheotomy tapes.000 $60. **Difficult to determine at this stage as the needs may vary from time to time.000 $300 $70. if they break or run out. feeding bags.

132 Haldon street. DIRECTLY TO MOUSTAFA’S ACCOUNT: Account name: MOUSTAFA ALI BSB: 062 230 Account number: 11104866 2. Auburn. 150 Marsden street.1. level 2. PH: 0414 361 899  Parramatta area Masjid. WE COME TO YOU Brother WALID HARRIS PH: 0416 740 000 BROTHER AHMAD SRYTA PH: 0421 503 553 4. NSW. PH: 0449 197 998  Lakemba area Lakemba Musullah. Parramatta. 2150 IN THE NAME OF: MOUSTAFA ALI . PH: 0401 389 995 3. PH: 0423 376 785  Auburn area Bukhari house: 109 Auburn rd. SEND A CHEQUE ADDRESS: suite 24. Parramatta PH: 0423 376 785  Greenacre area 5 STAR SWEETS. WATERLOO RD. 20 Macquarie Street. Revesby. Lakemba. IN PERSON TO LOCAL MASJID OR SHOP  Bankstown /Revesby area ASWJ Revesby: 10/9-11 Mavis street. top floor.

a pole for his continuous feeds. There are many sick and dying around the world. will you help him come home to his family. the van needs to be a fairly new model as modifying the van will be very costly so we only want to do this once to a new model van. Knowing about young Moustafa. Allah will reward him and raise him up in status. some modifications are. wheel chair access. an oxygen cylinder holder that will also have to be fixed next to his chair. to his Mum. . a box that will be permanently affixed to the van for his emergency equipment etc How can you help!!! It’s obvious that whatever path of charity someone intends to donate to. Dad and two beautiful sisters? May Allah reward you for what you give. however you’re only capable of helping that which is in-front of you. a crate fixed to his chair for his suction machine.Most important for donations A van that will be modified to his needs. a bench on a pole to strap his ventilator down.

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