The story of Fatima
10 years ago ..a very special little boy was born,Zuhair …he stole my Heart and still has it in heaven ❤️. I am the sister of a little boy who was diagnosed with a rare disease which is found in 1 in a million … Alexander’s disease . In 2015 at the age of 2 years old ,my brother had started to show signs of delayed milestones and the circumference of his head was rather large which was abit odd for a 2 year old . After a visit to the paediatrition , he was transferred to many doctors , neurologists , hospitals and scans which then discovered that he had a neurological condition to do with the mylen sheath and white and grey matter of the brain but no one could find the actual diagnosis for this disease . Seizures began later on and became common he went in and out of hospital and was given Kepra to control the seizures . At the age of 8 , I knew all about his MRI scans , the condition that he had and the amount of medication that he had to take daily . He went for many sessions of physio and occupational therapy because of his milestones being delayed , he couldn’t walk without support , he couldn’t run or do anything that a 3 year old would do but he still tried and never gave up . Then he turned 4 and everything started to get complicated ( I was 11 at that time ). The medications stopped working and they eventually found “the neurologist “ . She diagnosed him with Alexander disease and had appointments with her quite often . After one of the appointments one day they broke the news … that my brother didn’t have much time left and it tore me apart . Eventually zuhair found it hard to breathe as his airways were narrowing , he had a gastrostomy ( a PEG tube in his stomach to get food through ) and the daily dose of morphine yet he still smiled like sunshine and brightened up the lives of all the people around him . The end was near and we were introduced to hospice care , the doctors became family and helped us every step of the way . Many machines were used. On the 26th of February 2018 , the light of my life had left this world peacefully , he had succumbed to Alexander disease but fought this battle with a smile and brave heart . I was helpless . Seeing him in pain tore me apart and I wouldn’t wish it upon anyone . This has given me motivation to persue in a career that will give me the ability to help children like my brother and to assist their family’s like those doctors did to mine .I write this with a heavy heart and tears in my eyes but sharing this to a global community means so much .My heart and prayers goes out to all of you brave soldiers and your families battling rare diseases 💜