December 4th, 2015: Wow. It has been an amazing, and overwhelming, week! Colin’s story went national via the Anglican Journal as well as CBC and was quickly followed by another article in the local Telegraph Journal. The response to these stories has created a flurry of activity that we’ve been trying to keep up with. Among the activity has been a whirlwind of conversations with our provincial medicare system and we are excited to announce that they will be contributing! Their contribution, along with all of the generous donations we’ve received and the events that have been planned for this month will most certainly put us at our goal! The holiday season will be an extra special time this year as we will officially wrap up our Caring for Colin campaign by Christmas! If we exceed our goal the additional funds will be held for any future medical expenses for Colin or donated to helping other children with his condition. We are amazed and so incredibly grateful to everyone who has supported us and spread awareness for us. Thank you a million times over!
We have created this website to keep Colin's supporters informed and to provide a means through which donations can be made to help fund Colin's brain surgery at the Texas Children's Hospital in March of 2016. We want to thank you all for your interest, your prayers and your support. Together we can help Colin beat HH.
Thank you so much!
Colin is our two-year-old son, a strong little boy with an infectious smile and a mischievous streak. For someone so young he has displayed great strength and empathy and we are very proud of him. Early on we realized that Colin had some health concerns and in time, we would learn that he has Pallister-Hall Syndrome. This is a rare genetic defect that, among other things, prevents his kidneys from absorbing sodium into his system. More significantly, it is the source of a benign tumour-like growth buried deep inside his brain on his hypothalamus. Called a Hypothalamic Hamartoma (HH) this growth causes our son to have 12-15 gelastic seizures a day and just as many throughout the night.
It has been estimated that there are only 9,400 pediatric patients in the world who have HH with epilepsy. Of those, 95% are sporadic (meaning they have no known genetic cause) which leaves a small 5% that are associated with Pallister-Hall Syndrome. What does that all mean? That means our little boy is estimated to be 1 of only 470 children in the entire world. It’s great to be special but to be that unique comes at a price. It comes with more questions than answers, more trials than results, and more unknowns than proven treatments. We are fortunate because our son was diagnosed at a very young age. Most paediatricians and neurologists have never even heard of this rare condition.
Why Texas? Because Canadian doctors simply do not have enough experience in treating HH. Because Texas has the most documented HH experience with pediatric patients. Because the surgeons in Texas have technology that would only require a pencil sized hole to be drilled in Colin’s head to allow access for a laser to ablate his HH. Because the hospital stay is minimal. Because their success rate for seizure freedom is good. Because the risks associated with laser ablation surgery are lower than traditional methods. Because they’ve done more than 40 of these surgeries in recent years. Because these surgeons have chosen to specialize in the treatment of HH. Because these surgeons care enough about the handful of children around the globe who have this that they host educational conferences for families who are desperate to learn. Because they are invested in the future of our rare and unique little boy.
The challenge with Texas is of course the cost. With the cost of pre-op testing, the operation itself, post-op testing, travel, accommodations, lost wages, and the foreign exchange rate we have estimated the cost will fall close to $200,000 Canadian. This is why we are sharing our story. This is why we are giving you intimate access to one of the most treasured pieces of our lives – our son. We need your help. Our son is plagued by these seizures every day, to only have 10 in a day is considered a great day for him. To have over 100 in a day while suffering with an ear infection is a reality for him. Please help us change his reality and give him a chance to be seizure free.
To learn more about this unique condition and the advanced surgical technique that will be used please watch this short video done by ABC News. This is where we’re going and these are the actual surgeons who will be operating on Colin.
1 (506) 847-2974
Paul & Kimberly