Understanding The Struggles Of SMA Type 1 With Oldest Living Child In Her Region
  • Title Understanding The Struggles Of SMA Type 1 With Oldest Living Child In Her Region
  • Summary After pop star Jesy Nelson recently revealed her twins have SMA Type 1, the oldest living child in her region and her carer have revealed what it's like living with the condition. Jessica Rogers has been Kacie’s carer and looked after her whilst she battles SMA Type 1, and spoke candidly about the way that they both navigate everyday life with the condition in Newcastle, United Kingdom. Aged 13, Kacie Martin has lived with SMA Type 1 since birth. SMA Type 1, also known as infantile-onset SMA or Werdnig-Hoffmann disease, is the most severe form of Spinal Muscular Atrophy. It is a rare genetic condition that causes progressive muscle weakness. The pair revealed the challenges that the condition poses, such as struggling to consume certain foods, including cheese, which poses a risk of choking to Kacie, and how strong she is at overcoming each battle. Jessica retells the story of how Kacie’s mother fought for her treatment at a time when SMA was not as widely understood. She said, "Nicole fought so hard to get to go to London; lots of conference calls were happening from doctors all over the world for 2nd, 3rd, and 4th opinions, and eventually she won the battle and got the protocols changed so that they would give BiPAP machines and a tracheostomy to children who were diagnosed with SMA Type 1. "Kacie is alive today because of Nicole. At the time, hospital protocol did not allow for a BiPAP machine or a tracheostomy to be given—despite both being life-saving interventions that would have transformed her ability to breathe and survive." After a week of being Kacie’s carer, Jessica knew that they were a dream team together. Talking about being Kacie’s carer, Jessica says, “If you ever get the chance to look after a little girl with SMA, go for it. She will honestly change your life.”
  • Credit @lifewithsmatype1 via ARK Media
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  • Footage type Mobile phone
  • Filming Location Newcastle
  • Country United Kingdom

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Date Posted: 20th January 2026

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