Living with Krabbe Disease: Jackson’s Story

Every day, Jackson Garwood’s parents, Darren and Rebecca, look at him and smile. There were points when they didn’t expect to have their son for this long. You see, Jackson was diagnosed with Krabbe disease, a rare inherited disorder, at just one year old. At the time, shares ITV News, doctors told his family that Jackson would most likely not live past two years old. But Jackson has exceeded expectations; his eighth birthday is fast approaching. 

When Jackson was first diagnosed with this condition, his parents were shocked. As they learned about Krabbe disease, their shock only grew; there was no cure. But his parents have never given up. Alongside home care, pediatricians, and hospice support, Jackson has made it to where he is today. He loves when his family sings to him or reads him books. In fact, his parents even launched a series of books called Jackson Superhero!

Moving forward, his family don’t know how much time they have left , so they’re doing their best to enjoy every day that they can with their son. Right now, they are crowdfunding to help afford some special equipment so that the family, including Jackson’s sisters, can all take a vacation together. If you’re interested, you may donate here. You can also follow along with Jackson and his family on Facebook.

What is Krabbe Disease?

Also known as globoid cell leukodystrophy, Krabbe disease is a rare genetic disorder that affects the nervous system. Inherited in an autosomal recessive pattern, Krabbe disease causes the abnormal production of galactocerebrosidase (GALC), an enzyme which normally breaks down lysosomes. In this condition, GALC is either produced at extremely low levels or not produced at all. As a result, galactolipids (a type of fat) accumulate in the body and damage or destroy myelin, the protective covering of nerve cells. In many cases, symptoms appear before six months old and children may only live to ages 2 or 3. However, as Jackson has shown, these numbers are only an approximation. Symptoms can (but do not always) include:

  • Fever with no sign of infection
  • Lethargy or lack of alertness
  • Feeding difficulties
  • Unexplained crying and extreme irritability
  • Loss of head control
  • Frequent vomiting
  • Developmental delays or developmental regression
  • Muscle spasms
  • Seizures
  • Difficulty breathing and/or swallowing

Krabbe disease may also occur in slightly older children, known as late-onset. Symptoms can (but do not always) include:

  • Progressive vision loss
  • Loss of manual dexterity
  • Muscle weakness
  • Difficulty walking
  • Cognitive delays or impairment
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

Share this post