02/09/2025
Our Members Include SMA Babies... Pio is one of them... Here is his story... ❤️🙏❤️
August is SMA Awareness month
I would like to share our Pio's journey battling this disease from day 1 to present, before SMA Awareness month comes to an end and September 1st, 2 years ago when we found out he is diagnosed with SMA type 1.
For those who doesn't know what SMA or Spinal Muscular Atrophy is, it is a rare, inherited genetic disorder that causes progressive muscle weakness and wasting. It's caused by a mutation in the SMN1 gene, leading to a deficiency of the survival motor neuron (SMN) protein, which is essential for motor neuron health.
Pio is diagnosed with SMA type 1 which is the most severe form of this genetic disorder, often leading to symptoms at Birth or within the first 6 months of life. SMA Type 1 is particularly affecting the ability to sit without support, breathe, feed, swallow. Without treatment, life expectancy is typically limited, many children with type 1 do not live past age 2.
Pio is diagnosed with SMA type 1 when he was 3 months old and that was 2 years ago. We've never heard about this disease nor if this disease actually exists.
Thankfully, he was able to take the treatment at 7 months by the help of one of the biggest vlogger in the Philippines, I won't mention his name but thank you so much for being a big part of saving our Pio. Evrysdi (Risdiplam) is the treatment for SMA which is the only treatment for SMA available in the Philippines that costs ₱200,000 pesos per bottle and he takes it every day and one bottle only lasts less than a month. This treatment helps him to stop the progression, this increase the production of survival neuron (SMN). Unfortunately, we cannot sustain this drug, it is prohibitively expensive to access Risdiplam in the Philippines. There's a lot of improvement with Pio when he started Risdiplam like, he was able to lift his hands and feet by gravity, he can move his legs on his own when sitting (with support) and he can minimally move his head. That's a lot of progress in his first 2 bottles of Risdiplam but despite this progress our worries still remains on how we can sustain this expensive treatment.
I uploaded this video to show everyone what life with SMA baby is, this is also an awareness to everyone about this disease to prevent the progression overtime as this disease has no cure yet but can prevent the progression atleast first month of life.
As we struggle on sustaining this drug. I'm still here desperately asking for your help and prayers to make things possible for Pio. To all people who helped us to get this drug, thank you for saving our Pio. Look at him now being brave and still fighting, living past age 2 where all of his Doctors said that he wouldn't be able to reach his 2nd birthday.
To anyone who would like to help I'll be posting my bank details below:
BPI
Ydette Nicole Sanchez
2999406325
Union Bank
Ydette Nicole Sanchez
1093 2266 0728
Gcash
Ydette Nicole Sanchez
09277026582
