Our son is two years old, and since the moment he was born, he has been fighting a battle most people cannot imagine. He was diagnosed with Lissencephaly ("smooth brain") and Microcephaly. These are rare, terminal neurological conditions that mean his brain did not develop the folds and grooves necessary for standard function.

In Alberta, there are fewer than 10 known cases of this condition. Across Canada, it is estimated that fewer than 1,000 cases have been documented in the last decade. Because of this rarity and the incurable nature of the illness, families like ours often find themselves in a "shadow zone" where government research and funding are tragically lacking.

The Reality of Lissencephaly

While most two-year-olds are running, talking, and hitting milestones like jumping or following simple commands, our son’s journey looks very different. Lissencephaly causes profound developmental delays and a life expectancy that is often tragically short.

However, against all odds, our son has shown us what "warrior" truly means. He has achieved what many specialists thought impossible:

• Physical Strength: He can, with assistance, roll from his back to his belly—a milestone very rarely seen in children with his condition.

• Eating: He is still able to eat orally, (on a liquid diet) avoiding the immediate need for a feeding tube that most children with Lissencephaly require.

• Spirit: He smiles, and on rare, beautiful occasions, he lets out a giggle or a laugh that lights up our entire world.

The Hidden Struggle: Epilepsy and Sleep

The "smooth" structure of his brain means his neurons are constantly misfiring. He suffers from a severe form of epilepsy where his brain rarely gets a break from seizure-like activity. He rarely sleeps for more than two hours at a time. For nearly two years, his mother has not had a full night’s rest, acting as a 24-hour nurse. Because our income exceeds the poverty line (often cited as $30k–$40k), we are disqualified from many "additional" supports, despite the fact that a living wage cannot cover the astronomical costs of terminal and what may soon be palliative care.

The Specialized Tools for Survival

Because our son’s condition affects every bodily function—from breathing to bone density—he requires an array of specialized medical equipment that insurance and government programs (like FSCD) often refuse to cover or take years to approve. We are seeking funds for:

• Respiratory Safety: High-grade suction equipment to prevent aspiration (a leading cause of death), and specialized oximeters and seizure-detecting sleeping pads to alert us when his breathing or heart rate fluctuates during "unseen" seizures.

• Mobility & Positioning: Tilt-in-space wheelchairs and specialty strollers to provide the postural support he lacks, as well as standing frames and dynamic mobility systems to help his circulation and bone health.

• Orthotics & Support: Custom AFOs (Ankle-Foot Orthotics) and body braces to prevent his joints from stiffening and to keep his body aligned.

• Hygiene & Daily Care: Specialized bath seats, transfer lifts to safely move him as he grows, and adaptive seating for floor-time play and therapy.

• Therapeutic Nutrition: His Ketogenic formula—which acts as a vital medical intervention for his seizures—costs nearly $300/month, with other necessary formulas adding another $200/month without funding from government or charitable organizations. Whom we’ve received funding from for the past year and are now backing out of funding due to the length/cost of his diet.

Why We Need Your Help

We are not asking for a miracle cure; we are asking for the tools to make his life as comfortable and dignified as possible. Between therapies (Physio, Occupational, and Speech) and basic life-sustaining supplies, we spend $1,000–$2,000 every month out of pocket.

No parent should ever feel they cannot provide the bare essentials for their critically ill child because of a callous lack of government incentive or insurance loopholes. It truly takes a village to raise a child, especially one as special as ours.

We are so grateful for any contribution—whether it is a donation, a share of this page, or a kind word. Thank you for seeing our son, recognizing his triumphs, and helping us cherish the time we have with him.