UPDATE DECEMBER 8TH, 2017
Daniel continues to get stronger every day. He will begin attending school at Holland Bloorview Kid Rehabilitation Hospital a couple of days a week. Please send your well wishes to Daniel and his mom as they continue their recovery journey leading into the holidays.
UPDATE DECEMBER 1ST, 2017
Daniel and his mom have moved from Sick Kids Hospital to Holland Bloorview Kid Rehabilitation Hospital to continue with a new phase in his recovery journey.
Monday, Nov 20/17 – 3:25 p.m.
“He came out of surgery 2 hours ago. He is asleep in the icu, on morphine”
Tuesday, Nov 21/17 – 4:36 p.m.
“Daniel woke up briefly and was responsive and moving his arms and legs, kicking blankets off and stretching”
Friday, Nov 24/17 – 2:30 p.m.
"Hi Dianne, Thank you so much for all the lovely gifts. Daniel is doing really well today. He is moving his head now."
Saturday, Nov 25/17 – 10:30 a.m.
“He opened his eyes wide last night”
Sunday, Nov 26/17 – 3:36 p.m.
"He’s sitting Up"
UPDATE: November 27, 2017
Daniel is Growing Stronger Every Day. His mom, Ashley, would like to extend a heartfelt thank you to those of you who have kept her and her son in your thoughts while Daniel underwent Corpus Callostomy brain surgery.
Epilepsy Durham Region made a special visit to Sick Kids hospital to wish Daniel a very happy 6th birthday on November 23rd. Later this week Daniel and Ashley will continue their recovery and rehabilitation journey at Holland Bloorview Kids Rehabilitation Hospital.
Please continue to follow Daniel and his progress with Epilepsy Durham Region and, to learn more and how you can help please continue reading his story.
WELL WISHES FOR DANIEL FROM OUR COMMUNITY FAMILY:
Lorraine: Sending good thoughts and prayers to Daniel and his family.
Cindy: Sending hugs and prayers xo
Monica: Love and prayers to Daniel and his family, wishing you a speedy recovery ! ❤️
Shawna: Sending prayers
Joanne: Sending hugs
Rhonda Mulcahy, North Ward Councillor, Town of Whitby: Be strong little man. We all are wishing you the very best for a speedy recovery. Take care of yourself Momma Ashley. You have a community behind you.
Linda: Hi Daniel. Iam sending lots of prayers, hugs and kisses and lots and lots of good wishes for your speedy recovery.
A Message from a Mom
Thank you for taking the time to understand what Lennox Gastaut Syndrome is and what it can mean to a family.
Daniel has intractable epilepsy and has failed 10 anti-epileptic medications in 3 years. He has been taking CBD oil for a year. While there has been some reduction in seizure activity, it is not consistent and this treatment is very expensive.
Later this fall (November 20th), Daniel is scheduled for a rare brain surgery called corpus callosotomy He is expected to spend a week in the ICU at Sick Kids Hospital and an additional 5 weeks recovering at Holland Bloorview Kids Rehabilitation.
I am the primary care giver for my son and was required to leave my job to care for him. I am a student at York University and will graduate in the spring of 2018. During Daniel’s recovery I will be staying/sleeping at Sick Kids Hospital and Holland Bloorview Kids Rehabilitation with him, only leaving briefly to attend classes.
The expenses associated with his treatment are very worrisome and frightening. We have recently relocated to Whitby to be closer to family. Daniel will be spending his sixth birthday and Christmas in hospital.
Thank you again for taking the time to understand our story and the story of other families living with the complexities of epilepsy.
- Ashley, Daniel’s Mom