When Sam was born 14 years ago, the fight to keep him alive and give him a good quality of life started right away. Born with a rare genetic disorder called Prader Willi Syndrome, Sam was unable to drink milk due to low muscle tone and had to be fed via a tube going into his nose straight to his stomach. He has been in and out of hospitals all of his life and has seen numerous doctors and therapists to manage the many complications brought about by the disorder. Unfortunately, despite all the interventions and Sam’s own drive to be able to do more, he still isn’t able to speak much, is not fully toilet trained, nor able to walk long distances without help. Our little man is fighting big battles on all fronts.
Today, Sam’s biggest challenge is a severely-progressing neuromuscular scoliosis coupled with kyphosis (also known as hunchback). His back has an S curve measuring at least 94 degrees, resulting in constant pain, affected lung function, and an imbalance in his gait that makes walking harder for him. Without surgery, Sam’s future looks bleak as the scoliosis will worsen to the point of squeezing vital organs. It is also imperative that he get the surgery as soon as possible since his Prader Willi Syndrome puts him at risk for obesity, which will disqualify him for spinal surgery.
We have found a solution for him, with a cutting edge surgical procedure, called Anterior Scoliosis Corrective Surgery (ASC) that, sadly, is not available in the Philippines. ASC is the best option for Sam since it will still allow him to grow and conserve his flexibility, which is of utmost importance due to his mobility impairment. The cost of the procedure is daunting, at €80,000 (Php 4.6M) for medical expenses alone. It is also not available in the Philippines yet, which is why it will be performed by Dr Juan Carlos Rodriguez Olaverri of Clinica Corachan in Barcelona, Spain.
Our family needs to raise €80K or ~Php 4.6m for the surgery alone. Please help Sam get the surgery he badly needs by supporting the various events we put up here and by sharing this page.
We thank you from the bottom of our hearts.
- Sam and family
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Hannah Grace T. Gamis
1626 1117 45
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