Patient Story: Dad Sings to Son with Krabbe Disease

One of six-year-old Jackson Garwood’s favorite things to do is listen to his father sing. Some of his favorite numbers include ‘Talk Tonight’ by Oasis and Aqualung’s ‘Brighter Than The Sunshine.’ His father and the rest of his family deeply appreciate the little moments, as they don’t know how many Jackson has left. He has Krabbe disease, a rare and progressive neurological disorder.

About Krabbe Disease

Krabbe disease, also called globoid cell leukodystrophy, is a rare disorder that causes the destruction of myelin in the brain and nervous system. It can range in severity between affected individuals, but it is typically fatal by age two. Symptoms include fever, difficulties feeding, vomiting, loss of head control, developmental delays, irritability, unexplained crying, muscle spasms, and declines in alertness. These effects are all the result of a mutated gene that is inherited in an autosomal recessive pattern. This gene is responsible for an enzyme called galactocerebrosidase (GALC), and when there is not enough of it, it allows fats to accumulate. This buildup then results in the destruction of myelin. Unfortunately, there is no cure for this condition. Treatment is symptomatic.

Jackson’s Story

Jackson was diagnosed with Krabbe disease when he was one, and his parents were devastated to hear that it was unlikely he would live past two. Since then, he lost a number of developmental milestones and no longer talks or moves frequently.

At age six, Jackson now needs to be tube-fed. He still loves to hear his father sing, and cuddling is his favorite. Every day, his parents ready him up to ten stories because he loves to hear their voices. The Garwood family’s goal is to make each day beautiful; they want every last day with Jackson to be a special one. While the symptoms are getting progressively worse, there is so much effort being put into making Jackson happy every day.

Fundraising for Jackson

To afford his care, the Garwoods have had to fundraise through sponsored walks. This year alone, the family plans to walk over sixty miles to raise the money needed for a hydro-pod, which would help Jackson bathe.

Additionally, Jackson’s father, Darren, has written three books for his series titled “Jackson Superhero.” Every cent he has made has gone towards his son’s care, as will all the money made from the upcoming fourth book.

The stories center on a superhero named Jackson whose powers are absent during the day but strong at night. Darren hopes that they act as a legacy to his son; they’ll constantly remind people of him even after he is gone.

You can donate to the Garwoods here.

Find the source article here.

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