Saving Skye (Spinal Muscular Atrophy Type 1)
Dear Friends:
Thank you all for your prayers for baby Skye. Skye passed away on December 21, 2019 due to respiratory failure. She is no longer suffering.
Here is Skye's story and battle with SMA:
https://smauk.org.uk/skye-inez-taylor
https://www.statnews.com/2020/02/07/a-lottery-like-no-other-offers-up-a-cutting-edge-medicine-with-lives-on-the-line/
During the 1.5 months at the hospital, we got to watch her grow and we saw the beautiful and amazing girl she was becoming. She never cried during medical procedures and smiled and engaged everyone. She brought so much joy and love to us and will always be in our hearts.
We thank you for your prayers during this difficult time. Your generosity will be used towards Skye's medical, memorial, and SMA-related funding mentioned below.
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This is a fundraiser to offer hope and life-saving treatment for our baby Skye Taylor, born on June 24, 2019.
On November 14, 2019 (approximately 4.5 months of age), baby Skye was diagnosed with Spinal Muscular Atrophy Type I (https://en.wikipedia.org/wiki/Spinal_muscular_atrophy) . SMA is a terminal muscle degenerative disease that results in muscle wasting and inability to swallow and breathe, where infants often die of respiratory failure or suffocation before reaching the age of two. Type 1 of the disease is the severest form of SMA and leading genetic cause of death in infants.
Skye is our only child and miracle baby, conceived after four fertility treatments. She is a smiley, happy baby who likes to babble sing with parents. We cannot imagine life without her nor watch her suffer with SMA. SMA Type 1 patients are missing the SMN1 gene that produces the survival motor neuron protein and have two copies of the backup SMN2 gene to produce the protein but it's not enough to prevent respiratory failure. Skye is taking Spinraza which works with the backup gene to help halt progression of the disease.
However, there is a gene therapy called Zolgensma (https://www.zolgensma.com/) , which would add back a fully functional copy of the missing encoding SMN1 gene that caused the disease in the first place. Patients on Zolgensma have started experiencing improvements within the first 24 hours of treatment (https://smanewstoday.com/2019/06/14/familys-story-lifesaving-zolgensma/).
This treatment is available in the U.S. for $2.1M (US dollars), making it the world’s most expensive drug. Zolgensma is not available or covered here in Canada. Due to the degenerative nature of the disease, we are racing against clock and appealing to family, friends, local and global community to raise funds for Skye’s gene therapy.
Please donate TODAY and share to your family, friends, and the world. to give Skye the chance at life.
If we are unable to meet the fundraising target of $2.8 million dollars or the funds raised are no longer needed for Skye's Zolgensma treatment, we will pay any funds that have been raised towards: i) Skye's medical costs, memorial service and keepsakes; ii) SMA genetic screening for family planning; iii) and fundraising efforts towards Cure SMA Canada and Cure SMA.
