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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:


<a href="https://smauk.org.uk/skye-inez-taylor"><a href="https://smauk.org.uk/skye-inez-taylor" target="_blank" class="" rel="nofollow noopener noreferrer">https://smauk.org.uk/skye-inez-taylor</a></a>


<a href="https://www.statnews.com/2020/02/07/a-lottery-like-no-other-offers-up-a-cutting-edge-medicine-with-lives-on-the-line/"><a href="https://www.statnews.com/2020/02/07/a-lottery-like-no-other-offers-up-a-cutting-edge-medicine-with-lives-on-the-line/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.statnews.com/2020/02/07/a-lottery-like-no-other-offers-up-a-cutting-edge-medicine-with-lives-on-the-line/</a></a> 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. -------------------------------- 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​ (app​​roximately 4.5 months ​of age), ​baby ​Skye was diagnosed with Spinal Muscular Atrophy  Type I (<a href="https://en.wikipedia.org/wiki/Spinal_muscular_atrophy" target="_blank" class="" rel="nofollow noopener noreferrer">https://en.wikipedia.org/wiki/Spinal_muscular_atrophy</a>) . 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 (<a href="https://www.zolgensma.com/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.zolgensma.com/</a>) , 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 (<a href="https://smanewstoday.com/2019/06/14/familys-story-lifesaving-zolgensma/" target="_blank" class="" rel="nofollow noopener noreferrer">https://smanewstoday.com/2019/06/14/familys-story-lifesaving-zolgensma/</a>). 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.

Saving Skye (Spinal Muscular Atrophy Type 1)

Dear Friends! 

Thank you for coming to our page and for your time to learn about our story. We are asking you to help a little human being to breathe and a chance at a normal life. We are hoping to gather funds for an incredibly rare medicine for our 2 months old son. Even if you cannot help financially, we would really appreciate if you could spread the word &amp; share this information with your network. 

Alex was born a healthy baby and the first month we were beyond overjoyed to welcome him to our lives. Soon we noticed that he is not moving hands or legs and can't hold up his head. The DNA tests confirmed the worst, he has Type 1 Spinal Muscular Atrophy (SMA) - a genetic disease that does not let muscles to develop properly, which means that eventually he will suffocate because his muscles will not be able to contract. Doctors gave us 9 months. 

Up until 3 years ago there was no cure, but now there is a drug, Spinraza, which significantly slows down the progression of this horrible disease. In Canada and in Europe the babes are given shots almost immediately after the diagnosis, but in Russia, where we live - it has only been approved in Aug 2019 &amp; simply not available through government programmes till at least Feb 2020. 

Our world has crumbled. How can we find $600,000 (CAD) in time to save our baby Alex before disease would wreck total havoc with his fragile body &amp; before Russian government would be able to help. Each shot costs $150,000 (CAD) and first course consists of 4 shots. 



With a lot of hard work, support &amp; charity from our network we were able to find access to the drug in Russia, medical facility that was able to administer the medicine, equipment to help Alex with breathing and raise almost the entire sum which covers completely the first 3 shots. At the moment of this posting we were able to raise $550,000 (CAD) through crowdfunding &amp; are really close to have the complete amount for the final shot. 

Alex has already received first shot of Spinraza on Dec 12th. The next 3 are scheduled for Dec 26th, Jan 9th &amp; Feb 13th.

It is a true miracle before Christmas &amp; we were able to accomplish a lot within the first month after the terrible news but now asking for help from international community. We are actively continue fundraising efforts in Russia as well. We simply cannot deny our little angel a chance at life. 

Thank your for your time &amp; for reading our story. 
We would be forever grateful for any help you can give..  

Hope your family is healthy and safe this Holiday Season! 
God Bless!

With deepest thank you! 
Mom &amp; Dad of Alex, 
Yulia &amp; Artyom Gulyants

Disclaimer: 
I'm Alex's aunt, Elena &amp; organizer of this Go Fund Me Fundraiser for my dear nephew Alex. I live in Toronto, Canada  &amp; will be transferring funds directly to Alex's parents in Russia. Please reach out to me if you have any questions. 

To reach Alex's parents directly: 
Artyom -[email redacted]

FB Group (we are working on translation &amp;  post progress for our little baby &amp; fundraising efforts updates): <a href="https://www.facebook.com/groups/744086709406426/about/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.facebook.com/groups/744086709406426/about/</a>

Our family works with the following organizations in Russia: 

Charitable Fund: Crimson Sails - <a href="http://bfap.ru/" target="_blank" class="" rel="nofollow noopener noreferrer">http://bfap.ru/</a> |Fund for Families living with SMA: <a href="https://f-sma.ru/fund/contact/" target="_blank" class="" rel="nofollow noopener noreferrer">https://f-sma.ru/fund/contact/</a>




Please note that GoFundMe only accepts payments from specific countries (Russia is not included) &amp; the funds will be converted to Canadian currency.
More on International Donations here: 
<a href="https://support.gofundme.com/hc/en-us/articles/203604354-International-Donations" target="_blank" class="" rel="nofollow noopener noreferrer">https://support.gofundme.com/hc/en-us/articles/203604354-International-Donations</a>

Please Help Us Save Baby Alex

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Saving Skye (Spinal Muscular Atrophy Type 1)

Please Help Us Save Baby Alex

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