On a sweltering hot day in July, Noah Aldrich completed a triathlon while supporting his disabled brother the whole way. He did this not only because he loves his brother and wanted him to have the enjoyment of the experience, but also as a means of raising funds to build a children’s hospice in Idaho that will be named ‘Lucas House’ in honour of his brother.
Lucas was born with lissencephaly (literally “smooth brain”), meaning that his cerebral cortex does not have the normal complex pattern of grooves, folds and wrinkles. Each child with this condition has a different spectrum of disabilities, including seizures and difficulties with swallowing. Some do not reach their teenage years. Alissa, the boys’ mother, says that while the news of his conditions was devastating, “we decided to make the most of his life for whatever its span, and of our own lives with him.”
In an interview with The Telegraph, their father Brian says that Lucas’ eyes light up when Noah enters the room. While Alissa and Brian have always treated Lucas as a full member of the family, they describe the love that Noah has for his brother as completely genuine. They see Noah as a boy who is “wise beyond his years and who knows about love and acceptance.”
Earlier this year, Alissa gave up her job to concentrate on raising money to build a children’s hospice in their home town, based on Helen & Douglas House in Oxford, UK. “I’m just so inspired by Helen House,” says Alissa. “We want to continue the work locally by creating Lucas House, where children can come for respite or end-of-life care.”