Iszack was born May 15, 2013. Our third child. At his two month wellness check our doctor told us that she was concerned about our baby's eyes, specifically that he may not be able to see. We were upset and in shock. After several specialists here in Guelph we were referred to Mcmaster Children's hospital to see a paediatric Opthalmologist. After meeting with Dr Sabri and doing an initial examination he explained that Iszack had only light perception vision. He diagnosed him with a congenital jerk nystagmus and a hypo pigmentation of both fundus( usually only found in children with albinism). Later that year Iszack had a small eye surgery to help with overall eye health and ongoing eye infections. Nothing would change his vision only time. Children can gain pigmentation within the eye until around the age of 5. Iszack had white to blond pigmentation. "Normal" you or I would present with brown to black. ( update: at Iszack's most recent exam he was presenting brown pigmentation and 20/75 acuity. Amazing!!!)
As Iszack grew and matured other things started to present themselves. There were noticeable delays. He wasn't walking, talking, he was having seizures. He was diagnosed with a global delay. When he did start walking his legs would turn in and sometimes he would drag one of them( later diagnosed as a tibial torsion from the knees down). It wasn't until a camping trip a mutual friend of ours asked if she could take a video of Iszack. She sent it to her brother in law, a paediatric neurologist at Mcmaster Hospital. He watched the video and quickly agreed to see Iszack. After a lengthy examination he told us he was also concerned and asked if we would agree to genetic testing. The testing revealed a genetic disorder 16p11.2 microdeletion. Within this condition all of the symptoms and issues Iszack was experiencing were listed. We connected the dots, found the missing puzzle piece. We now had a reason why and could now better help Iszack. We celebrated.
After genetic testing we were also referred to a genetic counsellor. It took 2 year to get in to see the doctor. She went over all genetic results and explained that a rare cancer gene was found in both Iszack and my husband. Not what we wanted to hear but on the positive side we knew about it and could actively monitor and do testing. They've both been referred to a cancer centre in order to test yearly. At this time Iszack is seeing an endocrinologist who is monitoring this closely.
Iszack at 6 years old and such a vibrant happy boy. He just underwent a psychological evaluation in order to help with school placement. He is now attending grade 1 in a life skills program. We are thrilled and excited about Iszack’s future. Iszack is doing amazingly well and progressing at his own pace.
Iszack is now 8 and is a happy and loving boy with the kindest heart. Iszack loves to camp at Sunny Valley Park in Owen Sound, his dog Ruby, his family/friends and school. He is now in grade 3 in a life skills program. He loves school and is learning so much. He has the BEST teachers and support staff. There isn't much that Iszack doesn't like, he takes on every day with a big smile and enjoys everything around him. He is pure joy and only sees the good in the world. I've often wondered what it would be like to see things through Iszacks eyes, always positive. He's always asking "I make your heart happy"? He wants everyone to be happy. Even with his ongoing health issues and difficulties, nothing gets him down.
Every day is the best day in Iszacks' world. He is pure sunshine, We call him our "vitamin I" and everyone needs a dose!!!
We would like to thank the Guelph Wish Fund from the bottom of our hearts for all you have done for Iszack and every other child that has been granted a wish. Iszack has thoroughly enjoyed his trampoline, hot tub and year of camping.
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