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On Oct 2011 I gave birth to a beautiful baby boy, my son Rafan. Two months later, I saw weird movements in his eyes; it didn't seem normal to me. So I went to hospital, they did a bunch of tests and said it could be nothing and probably just a breathing issue as he is a newborn.
The movements continued and my father noticed it during his trip from Vancouver and he told me that these are seizures. I took him to the hospital again and they started doing different tests again, including an EEG this time but they couldn't find anything.
I requested them to send me somewhere where I could get better results as it is not NOTHING. I was sent to SICKKIDS hospital Toronto and they did prolonged EEGs and indeed diagnosed him with epilepsy and was given medication with a follow up of MRI in the next few months.
We went for a vacation back home, the seizures got worse, we did an MRI there without a complete result, once we came back we met the neurologist (Dr. Jeffrey Kobayashi) and mentioned that he was getting worse, therefore he requested the MRI to be expedited.
On May 28th 2012, his had his MRI and we were heading home after the MRI when we received a call from the hospital asking us to return.
Once we returned, we were given the bad news of our life, our son has a brain tumor. They did more MRIs of the spine and all and then he was scheduled for surgery on June 13th, 2012.
The surgery went well, with the tumor completed removed by Dr. Michael Taylor. 7 days later on our wedding anniversary we were told that the tumor was cancerous and therefore, Rafan needs chemotherapy.
A month later, Rafan started his chemotherapy which continued for almost 8 months. After that, he still continued to have seizures, therefore once he was cleared off the cancer for more than an year, the doctors decided to do an Epilepsy Surgery. He had his second brain surgery on November 27th, 2013 and after that, his seizures improved quite a bit.
After chemotherapy he also had lots of physical and occupational therapy at Holland Bloorview rehab centre. After his second brain surgery he joined a pre-school named Silver Creek Pre-School(Toronto) that pre-school really helped him physically and helped him get ready for Junior Kindergarten. However, Rafan has a lasting impact from his tumor, he is non-verbal.
An year later, he was assessed by a Child Psychiatrist and was given the diagnosis of ASD(Autism Spectrum Disorder). We moved from Toronto to Cambridge(Waterloo region). There he was not supported at school fully due to his delays and he was attending three different places to learn, after fighting a lot for our rights, we decided to move out and moved to Guelph and here he received all supports including one on one EAs, full time school and now he is able to communicate a lot better. He is now using Proloque2go and sign language to communicate with the help of his teachers, EAs and speech pathologists all provided by the Upper Grand School Board and now he will receive his own Ipad with the Proloque2go app by Kidsability.
He is now 6 and half and is learning to use the potty and now completely eats on his own and loves his school. His seizures are very much improved and his functioning is a lot better and its been almost 6 years since he had his first surgery.
He has two younger brothers and lives with his parents.
This journey was not easy for me especially as a first time mom but I had support of my husband, my parents, my in laws and my sisters.
Everyone prayed for him, I spent my days and nights on prayers, the moments that I had whenever he went for a major or minor surgery, those were the hardest. What was harder was to get him to eat again as he quit eating during and after chemotherapy.
I feel that we are lucky to be in Canada as my son received a lot of support from the community and of course we didn’t pay for the health care.
And it was the good people who came and visited my son during his hospital days, people that were mostly our old neighbours, yes they were my mom’s friends and their families. Their support I can never forget, and trust me Allah helps the ones who visit the sick, and I have seen those people being so successful today.
My request to everyone is that if you know people that are suffering from an illness please help them. Not everyone survives an illness and you may regret one day.
Here in Canada most of us don’t have families and we need more support of our own community more than anyone else and of course their prayers.
Please become each other’s support and if you have stories of heroes like my son Rafan please share.
Picture: Rafan (right) with his brother Rayhan.