Most parents are eager for their child’s first words. But as the Daily Mail in the UK reports, Stevie and David Taylor waited in vain for three years to hear their golden-haired little girl, Fields, say her first word, “Mum.” When she finally did, it seemed nothing short of a miracle.
“All of a sudden I heard this little voice shout “mum,” Stevie explains to the news site. Stevie dropped what she was doing and ran to Fields. “I just couldn’t believe what I was hearing. There’s been times that I never thought I’d hear her speak. I was just over the moon. Now she’s started shouting for the dog and saying bigger words–she said the word dinosaur the other day–I nearly cried.”
After attending a conference in the United States, Leicestershire, U.K. resident Stevie started feeding Fields a diet that included eating four tubs of cream cheese a week. Known as the Ketogenic Diet, the strict high-fat, low-carbohydrate diet has shown promise in the treatment of Fields’ incurable condition, Glut1 Deficiency Syndrome (also called GD1 or Glut1).
Because the brain is starved of the simple sugar glucose in people who have Glut1 DS, they often experience seizures, muscle twitches, learning disabilities, and speech problems at a very early age.
Most epileptic patients start seizing at 10 years old. Fields was just 15 weeks old when she had her first seizure due to glut1 DS.
At first, Fields was diagnosed with epilepsy, but additional genetic tests showed the deletion in one of her chromosomes that indicated Glut1 DS. Glut1 DS is caused by a defect in the SLC2A1 gene and primarily affects the brain. The SLC2A1 gene is responsible for making glucose transporter protein type 1 (GLUT1), a protein responsible for transporting glucose from the blood into the cells.
Ketones, acids produced by the liver when the body begins using fat instead of carbohydrates for energy, can be used by the brain as an alternative source of energy. Strict compliance with the Ketogenic Diet produces those ketones. The diet allows no sugar and only minimal carbohydrates. It’s so important not to stray from the diet that Fields’ parents are constantly on the lookout for hidden sugars, such as those in toothpaste or medicines.
Stevie regularly measures Fields’ ketones with a blood-monitoring machine. Ketone levels that are too high could lead Fields into a coma.
“I do get funny looks when I give her a tiny piece of toast with layers and layers of butter on but the diet has really worked wonders for her. It doesn’t affect her weight either as she uses up every bit of fat she eats; she doesn’t store any of it.”
At the Ketogenic Diet conferences , similar to other resources like the Charlie Foundation, Stevie and David attended, they saw kids who were walking. Even though they know it’s a huge goal for Fields to aim for, their daughter has progressed so well on the diet that they’re hopeful.
“We know she can do it!” says Stevie, with a smile.
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