DAILY LIVING & MOBILITY

Making Memories with Maeve: Our Daughter With A Rare Disease

Rare Disease & Syndrome

Kirsten & Maeve Foote

About Maeve & Her Rare Disease: Lissencephaly

Our daughter, Maeve, was born with a rare and terminal neurological condition, lissencephaly (Miller-Dieker Syndrome). This condition causes Maeve to be physically and intellectually disabled, and as a result we celebrate every little milestone she reaches. It is easy to focus on the challenges that our family faces, but we choose to look at the love and happiness Maeve brings to everyone around her. This journey has not been easy, but Maeve is worth every second!

More Than a Rare Disease Diagnosis

Parenting Maeve has changed our lives and our perspectives on everything. We have been welcomed with open arms into the incredible community of special needs parenting, and we have met lifelong friends and allies. We have learnt that people with a diagnosis such as a rare disease are so much more than their diagnosis! We want people to know that disability is not scary or sad, it is just another variation of life. We love to share Maeve's story and the joy she brings to our lives everyday.

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