Colton was born on May 14, 1998. Since Diane and John are both carriers of the gene that causes Late Infantile NCL, they knew that Colton had a one-in-four chance of having the disorder. Colton exhibited signs of delayed development within his first two years and, shortly after he had his first seizure in January 2001, he was diagnosed with the Late Infantile NCL.
Colton’s early diagnosis allowed him to start taking anti-convulsive medication earlier in the progression of the disorder. The brain learns the activity of having a seizure, so the earlier the seizures are impeded, the less ingrained the activity becomes.
Carling and Colton both were diagnosed with Late Infantile NCL, but the symptoms present differently for each child. Alternative treatments that were beneficial for Carling are not necessarily appropriate for Colton. His regime is extensive. (click here to view his regular routine for May 2010). Working hard to minimize the amount of chemical substances which he receives – but still controlling his seizures has been a priority. He is on less medication than when he was first diagnosed – so we are pleased with this, as there is less concern about long term side effects on his liver or kidneys. All the supplements and tinctures which are on Colton’s daily routine are prescribed by his naturopathic doctor(s) and are having a very positive effect on his health.
At this time, Colton’s seizures are under control. He “walks” with assistance, occasionally moving his own feet, when supported from behind. Colton has a wheelchair, as well as a stander which he uses at school. The stander is critical to his health as well, since it allows him to bear his own weight for up to 45 minutes every day. (Kudos to his Educational Assistants Beth and Dawn, and the team at Charles Beaudoin school, who have been able to work out a routine that often sees him in the stander twice during a very busy school day!)
Colton’s communication was different than Carling’s when he was more verbal. He presented as though he was autistic (which he isn’t), but he did use a limited vocabulary. Colton currently is non-verbal, and so Diane uses bio-feedback and channeling to listen to Colton more effectively.
In February 2005, Colton got a feeding tube (G-Tube) to help him manage food which was becoming unsafe for him to eat by mouth. Since then, he doesn’t have to taste his medicine and herbal remedies, as they are given to him, along with blended food and vitamins through his G-Tube. He also now has a lot higher intake of fluids – water and juice made fresh twice daily from the juicer (fruit in am, vegetables in pm), which has helped him stay healthier as well.
Colton was invited to participate in the control group of a research project at Cornell University (NYC) in February 2005. Ten children were undergoing an enzyme replacement therapy (Colton was not selected to be one of them), which would hopefully halt the progression of the NCL disorder. Colton’s role was to demonstrate progression of the disorder without the enzyme replacement. He underwent extensive testing, and then John and Diane brought Colton back to New York City a year later to repeat the testing.
The good news from this, is that while Colton had some progression over the year, it was not significant. The neurologist working on the project gave perhaps the most encouraging comment when he said “I don’t know what it is you’re doing, but …. Keep doing it, because Colton is doing well”. This WAS encouraging news for a family that invests significant time and money every day in the well being of their son, and drives thousands of miles in a year to appointments to fine-tune his health with complementary health solutions.
In 2008, Colton travelled to Bangalore, India with 8 other team/family members for a life changing stem cell brain surgery. (see front page of website). It was an amazing experience and thanks go to the extremely professional and capable team at BGS Global hospital for this very positive contribution to Colton’s continued journey to health. Special thanks as well, to Maria Leslie who traveled twice to India... once to support the team, and previously, (with Diane) to donate her stem cells to be harvested into the 68 million cells Colton received in surgery!
Maria has worked with Colton for 5 summers – as his one on one support person, bringing him to camp, doing exercises/aquatherapy in the pool and generally jumping in to help wherever needed. She is moving on this summer – as she nears completion of her Masters degree in Education... and we are pleased to welcome Kyle McMahon to Colton’s team in the same role for the summer of 2010.
Colton’s health has been strong. He had a setback in January 2010 – when he was in Sick Kids’ hospital with pneumonia, then a secondary infection while in hospital. Since then we continue to rigorously monitor his respiratory system... and he has thrived using the naturopathic tools we have in home. Colton’s healing team continue to help him with his regeneration of cells and function, using many different hands on healing techniques, and extensive physio. (he is now receiving daily physio from the new Nanny Cathy Castillo who has a physio background). A highlight of the day is seeing Colton stretch his arms and legs when his face is washed in the morning! This is new since his surgery)
Colton attends school at Charles Beaudoin public school in Burlington, where he is finishing grade 6. He has two educational assistants (EA’s) who share the role of helping him integrate into regular grade 6 activities wherever possible. Colton has a special affinity for music, and the school, his teacher, and the Special Education Resource Teacher (SERT), support extra music learning for Colton as well as time in the sensory room. Colton’s vision is not as strong as it once was, but he still loves taking the school bus (one of his favourite things to look at when he was younger). Colton’s biggest joy in attending school is being with friends and visiting with the kids who talk to him, read him stories and help push his wheelchair. His friend Kyle Woods, in particular makes him smile a lot!