Hope for Rebecca Grace

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  • The diagnosis of Spinal Muscular Atrophy (SMA) for Rebecca Grace has been devastating.
  • A healthy body contains two copies of the Spinal Motor Neuron (SMN) 1 gene and two copies of the SMN 2 gene in each cell, however, the number of copies of the SMN 2 gene varies.
  • Some people having up to eight copies.
  • Rebecca has 0 copies of the SMN 1 gene and 2 copies of the SMN 2 gene.
  • This disease will affect Rebecca’s motor nerve cells in her spinal cord, taking away her ability to walk, eat, and breathe.
  • SMA does not affect Rebecca’s mental or cognitive abilities.
  • 95% of babies with SMA type 1 do not reach their 2nd birthday and it is the number one genetic cause of death in infants.
  • Rebecca has currently been given her first dose of Spinraza.
  • Spinraza is a Spinal Motor Neuron (SMN) enhancing therapy that works by targeting the SMN2 gene, causing it to make more complete protein.
  • We are very thankful that this treatment is available in Canada and hopeful that Spinraza can slow the progression of the disease in Rebecca’s body until we can get funding for a new gene therapy approved in the USA called Zolgensma.
  • With each day that passes without treatment for Rebecca, her motor neuron cells will continue to become weaker and weaker and eventually die. Once her cells stop working, they cannot be brought back. Zolgensma is designed to produce SMN protein in the motor neuron cells which preserves valuable muscular function needed for Rebecca to survive.
  • Your donations and prayers for Rebecca are greatly needed and appreciated.

https://www.gofundme.com/f/hope-for-rebecca-grace/donate

Sources & Credits: Go Fund Me
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