Rileys Story - Diagnosis CHIARI

$12,157 of $12,500 goal

Raised by 184 people in 4 months
Created January 14, 2019
Riley turned 16 last January, and for the rest of the year saw his balance worsen to the point, that by December 2018 he could not take a step without steadying himself to avoid falling, this accompanied by nausea, vomiting and other symptoms. Feeling all these things while still doing well with his studies at Banting highschool, peer tutoring, watching hockey with his family and helping out at home and with his younger brother. Local doctors had no explanation. So When most of us were getting ready to ring in the new year, on Dec 31/18, Riley was being rushed to SICK KIDS HOSPITAL in Toronto and about to be diagnosed with Chiari Malformation.Chiari Malformation is a condition where the brain is being pushed down onto the base of the skull. The treatment for this is a decompression surgery. In this surgery, the goal is to open up the skull and the lining that surrounds the brain and create more space for the brain to sit in the scull SICK KIDS does 2 of these surgeries every week.So after many CT, MRI scans and X-rays Riley was prepped for surgery the following Monday, he came out of it as expected and was returned to his room. By the next day at 3am the alarm went through the hospital, Riley had a code blue. Something no parent should have to witness their child go through...Thanks to the quick actions of the neurology staff at SICK KIDS Riley was revived and was intubated and fully reliant on ventilation and unable to move his body. A parents worst nightmare. After a tense 48hrs Riley was rushed into another brain surgery Thursday afternoon, doctors determined to stop Riley’s conditions from worsening. They removed his herniated cerebellar tonsils the largest they had ever seen, they had been restricting the flow of spinal fluid. Another 48 hrs later we started to see Riley breathe slightly along with the ventilator and his limbs movements improve along his right side. Slowly but surely every day, Riley is fighting to gain back his strength determined to go home.Riley and his family have a long road to recovery. More tests, equipment and physiotherapy ahead of them. The Neurosurgeons at Sick Kids are confident that because of his strength and determination to be healthier again that Rileys journey can have a happy outcome.But we need your help. 100% of the amount raised will go to Rileys care and the expenses that don’t disappear just because your entire life has to be redirected to caring for your child. While Riley’s parents support him through this trying time. Please help us support their whole family, If you cannot donate, please share so other may see Riley’s story and help anyway they can. Please keep Riley and his family in your prayers.2018 #CHIARI WARRIOR 2019 #CHIARI SURVIVOR
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Riley’s journey home
January 1 - May 9, 2019
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What a journey.

Because of the emotional, physical and monetary support of this group and community, this family was able to care for their child through the worst, be at his bedside and not fear of losing their home. They have been able to purchase the equipment and services Riley needed and will continue to need going forward, through his rehabilitation, and while he finds his new “normal” at home and at school.

My entire family was and is so touched by the compassion and support we received, we still cannot believe it. The caring words, encouraging stories, hugs and understanding when we broke down in middle of conversations, visits and just the incredible amount of sincere kindness we received.

For those of you watching this page because your child or loved one also has Chiari Malformation, here is Riley’s Current physical updates

Riley is able to eat almost all food now after surgery he was on a feeding tube for about 2-3 months and went through physiotherapy to regain his ability to swallow and breathe properly. Riley is on a BIPAP machine when he sleeps he may need that for life but it is essential for a safe and healing sleep. It took awhile to get the settings right for him but everything seems great with it now.

He can walk independently but will be using the walker most of the time for support and balance while he rehabilitates and goes through required physiotherapy and back to school.

Riley has to adjust how he goes through a typical school day as Chiari issues such as dizziness if head is lowered, no straining or impact activities/sports, etc...

This is a new life that the family is embarking on but Riley is here and breathing and walking, talking and eating everything we prayed and hoped for months ago.

Thank you to the incredible Neuro, respiratory and physiotherapy teams at Toronto Sick kids and Holland Bloorview children’s rehabilitation hospital. There are no words in my vocabulary good enough to express our gratitude for saving Riley. How do you thank people for a miracle? We are forever grateful to everyone who supported our family and Riley and a special thank you to Dr. James Rutka, Dr. Brian, Fraser Stevenson, the incredible nursing staff at Sick kids and HBCRH, and of course Ronald McDonald House Charities. ❤️ ❤️ ❤️ ❤️

We will be closing this page tomorrow, we wanted to keep it open till Riley came home so everyone could be updated on Riley’s journey home and to all who have followed this page could know how much they were truly appreciated.

Thank you.
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Riley’s weekend home passes have gone well and finally after his hospital units quarantine, due to cold viruses, he has been able to participate in therapeutic pool exercises.

Riley is still on schedule to come home the second week of May

Thank you everyone for your support. The major hurdle we are working through now is how Riley’s school day will be affected once he is back in alliston and what accommodations will be needed, and the challenges that will bring.
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Riley has been cleared to use the pool at bloorview rehab hospital with assistance. That was awesome news for Him!!!

Also a visit and spot with Riley’s neurosurgeon Dr. Rutka went well he is pleased with Riley’s progress and proud of his hard work, and even asked for a selfie with him lol
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$12,157 of $12,500 goal

Raised by 184 people in 4 months
Created January 14, 2019
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