Who is Baby Shamel?
Baby Shamel is a courageous little boy who requires your assistance. He is born with a rare genetic disorder that has made it difficult for him to breathe and eat without aid. The condition he has is called type 2 Spinal Muscular Atrophy (SMA), which affects only one in every 200,000 newborns.
Despite his struggles, Baby Shamel remains a fighter. He is always smiling and has an infectious spirit that inspires those around him. However, he needs our help to combat this disease. His family is struggling to cover the expensive medical treatments and equipment he needs to survive.
What is Type 2 SMA?
Type 2 SMA is one of the four main types of Spinal Muscular Atrophy (SMA), a genetic disorder that affects the muscles responsible for movement. Type 2 SMA is typically diagnosed in infancy or early childhood, and it is characterized by delayed motor milestones and moderate to severe muscle weakness.
Children with type 2 SMA can usually sit without support but have difficulty standing and walking independently. They may require mobility aids such as braces, walkers, or wheelchairs to move around. Other symptoms of type 2 SMA may include respiratory problems, such as difficulty breathing, swallowing difficulties, and scoliosis (curvature of the spine).
One of the most promising treatments for SMA is Zolgensma, it works by delivering a fully functional copy of the SMN1 gene, which is deficient in children with SMA, into the patient’s cells. The treatment involves a one-time infusion of the gene therapy drug directly into the patient’s bloodstream. However the cost of Zolgensma is exorbitant costing at least USD 2.125 million/SGD 3 million (depending on the current exchange rate).
Individuals with type 2 SMA require ongoing medical care and management to help maintain their mobility, respiratory function, and overall health. While type 2 SMA can be a challenging condition, with proper care and treatment, many affected individuals are able to lead fulfilling lives.
How can we help?
For this reason, Ray of Hope, a Singapore-based crowdfunding platform, has launched a campaign to assist Baby Shamel and his family. The initiative aims to raise funds to cover Baby Shamel’s medical expenditures, including a home ventilator he requires to breathe, as well as his ongoing medical care and treatment.
Donations from around the world are pouring in, with individuals touched by Baby Shamel’s story and his remarkable spirit. Thus far, the campaign has raised over $1 million, but there is still a long way to go to achieve the $3 million target.
Baby Shamel’s parents, both healthcare professionals, have been unable to work as much as before due to their son’s condition. This has placed a significant financial burden on the family, who are struggling to make ends meet.
However, with your help, we can make a difference. Every contribution, no matter how small, will go a long way in assisting Baby Shamel and his family in battling this rare disease.
You may contribute to Baby Shamel’s campaign on the Ray of Hope website. Your donation will directly assist his family in covering the medical treatments and equipment required for his survival.
Let us unite in supporting this courageous little boy and his family. Let us demonstrate to them that they are not alone in the fight against SMA. Together, we can make a difference in Baby Shamel’s life and provide him with a fighting chance against this rare disease.
To make a donation: https://tinyurl.com/yc57vh97
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