Thanks to the generosity of the donors, baby Devdan‘s parents, Shu Wen and Dave can now heave a sigh of relief. According to the latest update, the two-year-old boy, suffering from a condition called Type 2 Spinal Muscular Atrophy (SMA2) has received the gene therapy treatment, Zolgensma.
The treatment cost a hefty S$2.868 million, which prompted his parents to launch a campaign on August 3, to collect funds.
They have expressed their heartfelt thanks and gratitude for every people who came forward to contribute.
Baby Devdan Receives Treatment For Rare Genetic Disorder
Screenshot courtesy: love-devdan/ Instagram
On September 14, it was revealed that the treatment date for baby Devdan was postponed as he was down with a high fever. But thankfully, he recovered within the next two days.
For the unaware, SMA2 is a rare genetic disorder that damages nerve cells in the spinal cord and brain. There’s essentially a breakdown of nerve cells in the brain and spinal cords and the brain stops sending signals that control muscle movement.
Thus, affecting one’s ability to breathe, walk, swallow and speak eventually. Children who suffer from this condition are able to sit upright on their own but require assistance when it comes to walking.
However, with age and by the time they reach their mid-teens, they are unlikely to be able to sit independently.
About S$2.87 Million Collected Through Crowdfunding
Screenshot courtesy: love-devdan/ Instagram
Thanks to the good-hearted Singaporeans, the young boy’s parents could collect S$2.87 million through crowdfunding. The decision to crowdfund for Devdan’s treatment “took a lot of encouragement. This was like the last straw. It was now or never,” they shared.
The successful campaign was run on the platform, Ray of Hope.
How Will Zolgensma Treatment Help Baby Devdan?
Screenshot courtesy: love-devdan / Instagram
Unfortunately, there is no cure for this rare genetic disorder, but treatment can help to improve the symptoms. Zolgensma is a one-time gene therapy treatment for kids under the age of two years with SMA. It works by targeting the genetic root cause of SMA and replaces the function of the nonworking SMN1 gene.
Zolgensma treatment will help to increase baby Devdan’s chances of survival with little deterioration and will also improve his muscle strength.
We hope for a speedy recovery for Devdan!
The Four Types Of SMA
While Devdan is suffering from Type 2 of the rare genetic disorder, there are four primary types of SMA that affect young kids.
Type1: This is a more severe form of the rare genetic disorder Devdan is suffering from. Almost 60 per cent of people suffering from SMA have Type 1. Most symptoms of this type usually appear at birth or within the first six months of life.
You may find that most kids will not meet physical milestones like holding their heads or even sitting. Unfortunately, most kids suffering from type 1 SMA don’t make it till their second birthday.
Type 2: In this case, the symptoms in a child usually appears between the age of six months and 18-months-old. This condition has the tendency to affect the lower limbs. So while a child may be able to sit up but they won’t be able to walk. Most of them live into adulthood.
Type 3: This is the milder form of SMA. The symptoms in this condition may appear after the child’s first 18 months of life. Some of the major symptoms to note are difficulty in walking, frequent respiratory infections, muscle weakness and others. It usually doesn’t shorten the life expectancy of the patient.
Type 4: This condition is seen in adults and it is a rare form of SMA. It doesn’t typically appear until the mid-30s. In this case, there is usually muscle weakness and it increases with age. But they live full lives and are also mobile.
Can I Prevent SMA?
SMA is an inherited disease. If you or your husband carry the mutated gene that causes SMA, a genetic counsellor will be able to explain the chances of your child having SMA or being a carrier.
Based on that, you will be able to take the necessary steps before pregnancy to lower the chances of passing on SMA to your child. We understand this can be an emotional process.
But a genetic counsellor and other health professionals can help you learn about your options and make decisions that may be best for your family.
One of these solutions is the process called preimplantation genetic diagnosis. It identifies embryos that don’t have the mutated gene. Then the doctor will implant the healthy embryos during In Vitro Fertilization (IVF). This method ensures that your child is born with two healthy SMN1 genes and does not inherit SMA.
So, yes! Gene replacement therapies and treatments offer promise. If SMA runs in your family, do talk to your doctor before you get pregnant.
Lead/Featured images courtesy: Love-Devdan/ Instagram
ALSO READ
An Appeal To Help Save Devdan Who Is Suffering From Type 2 Spinal Muscular Atrophy
All you need to know about single-gene disorders in babies
