Micah - a determined 4 year old with SMA


Hey friends,

meet Micah - an amazing little four year old boy who enjoys all that life has to offer. He loves playing with his Ninja Turtles and stuffed animals, watching movies, singing constantly, imagining, swimming, drawing, spending time with his friends and cousins, learning letters and puzzles, and being just like his dad. However, there is one thing in Micah's life that is not so typical. He has spinal muscular atrophy (SMA) and is unable to walk .

Here is a short video of Micah climbing the stairs in his home.  Since it has been a while since Micah has tried certain tasks, his parents always worry that he has lost more muscle strength and is no longer able to complete them. He hadn't climbed the full flight of stairs lately so Jaclyn decided to try it to see how he got along. This boy isn't giving up anytime soon :) The full set of stairs took about 12 minutes for him to climb...just like the last time. Technically, he "shouldn't" be able to still do this...but Micah's family don't exactly listen to those predications in their house.



For the first year of Micah's life he developed and grew just as textbooks said he should. By thirteen months he was taking steps, but after two weeks he stopped. After months of testing and concern over his continuing failing strength, a diagnosis was finally reached. Micah, who had just turned two, had Spinal Muscular Atrophy (SMA) Type II. His parents, Randy and Jaclyn Gallant, were nothing less than crushed.

They want Micah to have equal opportunity in whatever environment he is in, especially in his own home. They must now undertake an incredibly expensive home renovation project to make it accessible for Micah.

Due to the lack of funding available to them, friends and family of Micah are asking for your help. Any donation that you feel you can provide would be greatly appreciated!  Thank you SO much for your support!

Three Ways to Help:

1. Donate on this website using a Credit Card and/or PayPal.

2. Mail your donation to the Provincial Credit Union, Metro Branch, P.O. Box 681, Charlottetown, PE C1A 7L3 with cheque made out to "The Micah Gallant Mobility Benefit Account". *You can also donate to the same account at any other Credit Union on PEI.

3. If you live in Nova Scotia or New Brunswick, you can donate at your local Credit Union. Just send us a message for the account number.

More about SMA and Micah's journey

Spinal Muscular Atrophy is a debilitating, genetic neuromuscular disease. It destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing and breathing. Thankfully, for Micah, his diagnosed type is not one that is fatal, but does present many complications that need to be managed throughout his life.

Despite the grief and heartache that Micah's parents were experiencing, they made a commitment to themselves, and to Micah, that they would give Micah a life full of love, opportunity and complete normalcy. By the third day of this diagnosis they became involved with the "Families of SMA Society of Canada" where they were able to find the support of other families across the country while educating themselves on the condition and what they could do to be proactive in regards to Micah's health. Due to the "saving grace" the society has and continues to offer them, the Gallants have become dedicated supporters of the society over the last two years. They have raised thousands of dollars through fundraisers, including Micah's 2km and 5km for SMA" - a walk, run and roll event to raise awareness of the disease, and funds for the society for SMA research.

On top of the connection they have made with "Families of SMA Canada", they also travelled to International SMA Conferences and SMA Camps to provide Micah with a connection with other children with the same condition so that he may see from a very young age that he is not alone in this journey, that he can do anything any other child can do, and how important it is to never give up.

Their goal is to keep Micah in the best physical shape as possible until a cure is found, but until then, teach him how to be independent and confident with his limited strength. Through the use of his power chair and stander, Micah is able to keep up with his friends and enjoy what life has to offer him at peer height and speed. However, Micah's house is currently not wheelchair accessible which limits the areas he is able to access and the tasks that can be completed independently in those rooms. It is so important to Micah's parents that he learn independence in his own home so that he can carry those skills with him through the years.

Randy and Jaclyn value accessibility greatly as they experience first-hand how difficult it is for someone with mobility struggles to navigate in a world that is not designed for such conditions. For the last year, they have been working to fundraise for an accessible playground at Micah's future elementary school so that he (and other children with physical disabilities in the future) will be able to participate in playground play at school without watching on the sidelines.







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Organizer

Donna Koughan 
Organizer
Charlottetown, PE
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