Lincoln Tier: little hero. Big smile

Saultite Lincoln Tier, son of Brookes and Nick, is the victim of a very rare and malicious disorder known as MECP2 Duplication Syndrome. It is the hope of his family that word of this disease spreads so that others will not have to suffer alone.

Saultite Lincoln Tier, son of Brookes and Nick, is the victim of a very rare and malicious disorder known as MECP2 Duplication Syndrome.

It is the hope of his family that word of this disease spreads so that others will not have to suffer alone.

A braver child couldn't be seen.

Despite every obstacle Lincoln must face now and through his entire life, he lights up an entire room with his smile.

His stubborn refusal to succumb to multiple cases of pneumonia makes him tougher than most action movie heroes.

MECP2 Duplication Syndrome is defined by intellectual disability, weak muscle tone and feeding difficulties.

Most tragically, it always inflicts some measure of communication difficulties (with some sufferers completely unable to communicate at all).

Yet another horrific aspect of MECP2 is that almost half of its sufferers do not survive past the age of 25, due to repertory issues.

No case is exactly the same as every other, and for that reason (among others) MECP2 is sadly under diagnosed.

Most families who experience the life changing blow it deals do not know of it, do not know it has a name, or that other families all around the world are sharing the same burden.

Lincoln and his family are not without hope, as there are efforts being made; in an animal model the disease has been reversed, and it is Dr Huda Zoghbi who will be designing an experiment that will, "Carefully analyze disease symptoms in an animal model following deactivation of the second MECP2 Gene."

What this means is that animals have, in a testing environment, had the second MECP2 gene deactivated, and what remains to be seen is how the animals handle treatments over a longer period of time.

The experiment will be conducted over a three year period and will cost $80,000 dollars to start for the first year money, and it is the hope of the Tier family that a Canadian charity can be made in an effort to help combat this atrocious disease and prevent future families of living with it.

In the works right now is a Canadian version of an American charity dedicated to raising enough money for Dr. Zoghbi to conduct the experiment proposed above, and the Tier family will be gathering resources and information to get that started here on Canadian soil.