Another Couple Seeks Donations for $3 Million Treatment for Baby’s Rare Condition

“Baby Shamel wants a chance to walk and play, but he needs your help” reads the title of the heartbreaking campaign first-time parents Achintha and Dula launched on Ray of Hope.

It is a campaign every parent wishes to not have to start.

Achintha and Dula first suspected something was “seriously wrong” when their son, Shamel, displayed symptoms of “floppiness and low muscle tone”.

He missed his motor milestones, not being able to “sit independently, crawl, stand or bear weight on his legs” even while his peers started walking at one year old.

He would later begin to fall quickly and flop forward without control, even while he was seated.

Shortly after this, he “lost the ability to kick”.

Despite all this, he was a “fully alert and happy” child.

This sent warning bells ringing and Achintha and Dula took Shamel to do several tests.

On 15 November 2022, Achintha and Dula were heartbroken to find out that their “little angel” Shamel suffered from type 2 Spinal Muscular Atrophy (SMA). He was only 14 months old.

What is Spinal Muscular Atrophy (SMA)?

A rare neuromuscular condition, which affects one in 10,000 people, SMA causes muscles to become weak and damages the nerve cells in the brain and spinal cord (which control essential skeletal muscle activity, resulting in muscle weakness and atrophy).

It leads to progressive muscular weakness and affects a child’s ability to independently sit, crawl, stand, walk, swallow, and even breathe.

It can also result in issues such as respiratory problems, scoliosis and osteoporosis.

Except in the rare cases caused by mutations in the UBA1 gene, SMA is inherited in an autosomal recessive manner.

This means that the affected child has two mutated genes, usually inheriting one from each parent.

Depending on the type of SMA one has, symptoms will vary from person to person when they first present themselves.

These symptoms include floppy or weak arms and legs, movement problems, tremors (the twitching or shaking of muscles), bone and joint problems (like an unusually curved spine), swallowing problems, and breathing difficulties.

SMA does not affect one’s intelligence, nor does it cause learning disabilities.

Moreover, while there are several types of SMA (which start at different ages), some cause more serious problems than others.

Type 1 is the most severe type of SMA and develops in babies less than six months old.

Type 2, less severe than type 1, appears in babies who are seven to 18 months old.

Type 3 develops after a baby is 18 months and is the least severe type affecting children.

Type 4 affects adults and normally only causes mild problems.

From past experiences, babies with type 1 SMA rarely survived after their first few years of life. However, outcomes have improved with early diagnosis as well as treatment.

The majority of children with type 2 SMA can survive and grow into adults, living long and fulfilling lives.

Types 3 and 4 do not normally affect one’s life expectancy.

Shamel’s Signs of SMA

Suddenly, everything made sense to Achintha and Dula.

Initially, being first-time parents, they failed to understand why Shamel seemed hungry but still rejected his food.

However, they now realise that Shamel has difficulties swallowing, making eating hard for him.

This resulted in a significant reduction in his food intake, which make him thinner and weaker.

Currently, Shamel can only sit with support. Even then, he is unable to sit for long periods, even minutes.

If he does not receive medication, the further deterioration and eventual death of his motor neurones will render him totally immobile and weak.

Yet, Shamel’s parents still hold out hope that he can live a life “as normal as possible” where he can “run, walk, and play with other kids”.

The Treatment

Shamel has hope of being treated.

Zolgensma, a one-time gene therapy, acts on the gene by replacing the function of the missing or non-working Survival Motor Neurone (SMN1) gene.

It is infused into a baby’s veins to stop the condition’s progress.

It is only available in Singapore through the Special Access Route, a route that allows for unregistered life-saving drugs to be imported into the country.

Zolgensma is known to be the most expensive drug in the world, costing USD 2.125 million, which is around SGD 3 million.

Time is extremely tight and of the essence, as Shamel has to receive Zolgensma before he turns two.

Achintha and Dula have started the campaign for donations for this treatment on Ray of Hope, “humbly turning towards the generous community for help”.

They acknowledge that this is a “big ask” and that reaching the target amount will be an “ardent task”.

Yet, they hope Shamel can get this second chance at life and thank everyone for their generosity in advance.

A Similar Story

The tragic story of Shamel might seem familiar to those who know about Zayn, a five-month-old boy who was diagnosed with Type 1 SMA when he was around five weeks old.

He was first brought to the National University Hospital when he grew gravely ill on 4 August 2022.

This came after a decline in his appetite just mere weeks after he was born, a similar symptom to what Shamel experienced.

It was later found that he had Type 1 SMA.

In order to treat his condition, Zayn needs Zolgensma too.

His parents, Mr Nabeel Salim Abdat and Ms Syahirah Yakub, set up a campaign on Ray of Hope for $3 million in mid-August.

Their campaign started strong with influencers and celebrities raising awareness of it all over social media.

Within a month, the campaign had gained nearly half the amount needed.

However, it plateaued soon after this, remaining just under $1.5 million for nearly two months.

Zayn’s parents were at a loss for what to do as they were “running out of ideas”.

Then, a true ray of hope.

On 4 November 2022, Ray of Hope reported that “several large anonymous donations” helped the campaign reach $3,015,167.50 ahead of its targeted closing date at the end of November.

The donors that helped Mr Nabeel and Ms Syahirah reach the target amount of money remain anonymous.

This was a “huge weight off [their] shoulders” as Zayn will be able to get the drug Zolgensma by early December.

Unfortunately, Zayn’s challenges will persist after he receives Zolgensma.

He is still at the National University Hospital’s high-dependency unit (after having been moved from the paediatric intensive care unit).

He remains dependent on tubes for breathing and feeding.

On top of this, there is a possibility that Zayn will have to continue taking Risdiplam, an oral medication that needs to be taken daily. Each bottle of Risdiplam costs over $15,000 and only lasts him 64 days.

Furthermore, as liver failure is a known possible side effect of Zolgensma, Zayn may also have to take steroids. This comes after Novartis, Zolgensma’s manufacturer, reported that a child in Russia and another in Kazakhstan had passed away earlier in 2022 from acute liver failure around five weeks after they took Zolgensma.

Mr Nabeel and Ms Syahirah have stated that they will monitor how Zayn responds to the drug Zolgensma before they decide on what to do next.

They are “very touched by the response and the continued support from the community, from our families and from everyone” in helping Zayn.

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Ray of Hope and How to Donate

Ray of Hope is a trustworthy crowdfunding charity which will handle all donations and transfer them directly to the hospital.

It does not take any cut of the donations and, as such, 100% of the donations will be used for Shamel’s treatment.

As of 12 December 2022, a little over SGD 150,000 has been raised and there are only around 100 days left.

Organisations or sponsors willing to support Shamel are encouraged to email his family at [email protected].

People may also follow his progress and journey with SMA on Instagram (@hope_for_shamel) and on Facebook “Hope for Shamel”.

Ray of Hope has stated that if Shamel’s parents are unable to raise the $3 million, there will be an option for refunds for donations.

Once the funds have been transferred to the hospital, however, Ray of Hope will not be able to process any refunds.

Of course, it is everyone’s hope that Shamel’s parents will be able to raise the funds and that Shamel will be able to be treated with Zolgensma.

Every parent’s hope is for their child to live a normal life and there remains hope for Shamel.

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Featured Image: Ray of Hope