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Parents' wish list for toddler who's running out of time

When Caelen Lam was 10 months old, his parents were told he might not live beyond his second birthday.

That was at the beginning of this year, when he was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a condition that causes progressive muscle degeneration and weakness, eventually leading to death. There is no cure.

Instead of wondering when they will lose Caelen, who is now 19 months old, to the disease, Mr Lam Kam Choy, 31 and his wife, Madam Lowell Tan, 34, are focusing on helping him live happily and comfortably for as long as possible.

The couple even drew up a wish list of things to do with him or for him to achieve before it is too late.

This includes flying a kite with him, taking a stroll with him and getting him to call them "Daddy" and "Mummy".

The couple also recently turned to crowdfunding to raise US$3,000 (S$3,900) for a multi-positioning chair which would help Caelen to sit up. 

They have exhausted their savings on Caelen's medical expenses and hospital bills, and only have enough to get by every month.

They told The New Paper in their Punggol flat last Friday about picking up the pieces after Caelen's condition turned their world upside down.

It started with the toddler's weak grasps and poor balance last year. When Madam Tan pointed this out to the doctor, he was put through a series of tests.

Madam Tan, a housewife, did research and narrowed it down to global development delay and SMA Type 2, which is less severe than Type 1.

TRIED TO BE POSITIVE

Mr Lam, a business development manager, tried to stay positive.

"I kept telling (my wife)... cannot be, lah. I was quite sure it was just slow development," he said.

In January, the couple received the devastating news - Caelen had SMA Type 1.

Her eyes welling up as she recalled the consultation with the doctor, Madam Tan said: "I burst into tears on the spot. He's still so young. Telling us he's not going to make it to two years old was quite terrible."

Nodding, Mr Lam added: "If it's Type 2, at least we still have him. Daddy could work a bit harder to take care of him in the future."

The couple spent the initial weeks in distress as they tried to grapple with the heartbreaking truth.

It also meant that the dreams and plans they had were dashed.

Holding Caelen's hand as they take a walk in the park was something Madam Tan had wanted to do since he was born.

This was recently struck off her wish list by means of an edited photo of her holding Caelen's hand while standing. Mr Lam's friend had edited the photo following a family photo shoot.

"I know it's something she's always wanted to do. She can't really see (her son stand), but at least this helped fulfil her wish," said Mr Lam as he pulled out a wallet-sized photo from a small resealable plastic bag.

"It's our treasure."

Their fondest wishes, hoping against hope, are for a cure for SMA or for a miracle to save Caelen.

But with no available treatment, the couple, out of desperation, even considered having a third child so their toddler could have umbilical cord blood stem cell therapy.

Cord blood is collected after childbirth. When the umbilical cord is clamped and cut, blood is taken from the section attached to the placenta.

Mr Lam said: "I read that in other countries, cord blood from healthy siblings of kids with SMA has helped. I love kids, and if the third child can help, why not?"

But there were other issues to consider apart from the cost - their next child has a 25 per cent chance of having SMA.

"We asked ourselves if it would be fair or right to our third child," Mr Lam said.

On the other hand, a healthy third child would be able to keep their three-year-old daughter, Cayla, company. She had been neglected since Caelen was diagnosed, Madam Tan said.

"It can't be helped. We have only so much time with Caelen. We want to treasure it," said Mr Lam.

They are as yet undecided about trying for a third child.

But almost 10 months since the diagnosis, the couple have learnt to cope despite the hurt.

Mr Lam is thankful for the support from the Rare Disorders Society (Singapore) and the other families with SMA children whom they met through the society.

COUNT BLESSINGS

The couple admit they are envious when they see families with "cute little boys", but have learnt to count their blessings for having such a precocious child.

"Caelen started articulating his thoughts in short sentences when he turned one. He is very articulate.

"Once in a while, we still ask ourselves why it had to be Caelen. I'll be upset when I see other parents taking their children for granted.

"I'm envious (of their healthy children) but this is reality," Mr Lam said.

Agreeing, Madam Tan said: "Our priority is to let him learn as much as possible, even if he may not be able to move one day."

At his tender age, Caelen has no idea about his condition. He still asks to kick a ball - one of his favourite toys - even though his leg muscles are weak.

"I'll place the ball right beside his feet. He's content just to give it a little push. To him, that's kicking," she said.

"I don't know what will happen when he becomes old enough to understand his condition," her husband said quietly.

While Madam Tan said she has fully accepted Caelen's diagnosis, Mr Lam is still hoping for a miracle.

"I just keep thinking and believing that somehow, Caelen will pull through, and his body will stop deteriorating.

"We have nothing left to lose. The least we could do is to have faith. If it helps you feel better, why not?" said Mr Lam.

Once in a while, we still ask ourselves why it had to be Caelen. I'll be upset when I see other parents taking their children for granted.

- Mr Lam Kam Choy

WHAT IS SPINAL MUSCULAR ATROPHY?

Spinal Muscular Atrophy (SMA) is a genetic condition that causes progressive muscle degeneration and weakness, eventually leading to death.

SMA Type 1, which Caelen Lam has, presents itself in infancy, between three and six months of age, said Associate Professor Stacey Tay, who heads the paediatric neurology department at the National University Hospital.

It is the most severe out of the four sub-types. Each sub-type presents itself at a different age.

"Prognosis for SMA type 1 is poor and mortality is high," said Prof Tay.

There is no local data on SMA sufferers, but global data shows that about one in 80,000 suffers from SMA Type 1, she said.

Caelen's doctor, Dr Saumya Jamuar, said these patients cannot sit independently and their muscles weaken progressively.

A majority of these patients die before turning two years old due to respiratory insufficiency, the genetics consultant at KK Women's and Children's Hospital, added.

Both doctors, however, pointed out that some patients live beyond two years. "This could be related to more aggressive management or to other unidentified genetic modifiers," Dr Jamuar said.

Prof Tay said putting the children on respiratory support like non-invasive ventilation, which Caelen is on, or ventilation via tracheostomy, where a tube is inserted into the windpipe, "would change the natural history of the disease".

While there are patients here who have lived beyond two years old after tracheostomy, it is not recommended because of the "overall poor prognosis," she said.

$4,000 chair to help Caelen

SUPPORT: The multi-positioning chair will help support the neck and body. PHOTO: LECKEY.COM

Mr Lam Kam Choy, 31, and his wife, Madam Lowell Tan, 34, turned to crowdfunding site Indiegogo to raise money for a multi-positioning chair that costs US$3,000 (S$3,900).

The chair, recommended by their son Caelen's occupational therapist, will provide adequate head and trunk support.

It will allow the boy to be at the same height with his family at the table for meals. He can also learn while sitting upright instead of lying down.

SAVINGS EXHAUSTED

Madam Tan said they resorted to crowdfunding as they had exhausted their savings of $12,000 on Caelen's hospitalisation and medical expenses.

"We initially thought of getting a bank loan but then realised that we would just end up with debt," she said.

The online fund-raising campaign will end next Monday but the couple have raised almost four times more than the US$3,000 they wanted.

They have ordered the chair from the US and it is scheduled to arrive in mid-December.

They plan to save part of the extra money for Caelen's medical expenses and help others with the remainder.

"We believe in paying it forward. It's only right that we help others. We know of some families who have children and are in need of money," said Mr Lam.

INDIEGOGO CAMPAIGNS IN S'PORE

DECEMBER 2013

Ms Jocelyn Suarez, 23, chalked up huge hospital bills after being diagnosed with Stevens-Johnson Syndrome, a serious skin disorder.

Her family's goal was US$30,000 (S$39,000), but they raised US$48,266.

October 2013

Miss Sarah Emmanuel, 24, and her sister Deborah, 25, turned to Indiegogo to raise money for their mother's funeral expenses.

The divorcee had been given the all-clear after a tough battle with ovarian cancer, but suffered a relapse last year.

The sisters wanted to raise US$9,000, but ended up with US$32,161 at the end of the campaign.

In both cases, it is not known what the extra money raised was used for.

Parents' wish list

DREAM 'COME TRUE': The photo, which was edited by Mr Lam Kam Choy's friend, fulfilled his wife's dream to walk with their son Caelen hand-in-hand.

1 To fly a kite 
with Caelen

2 To hold his hand and take a stroll together

3 To send him to school

4 Caelen to say "Daddy", "Mummy" & "Jie Jie"

5 Never to lose his smile

6 To train and help him stand

7 Doctors to find a cure for Spinal Muscular Atrophy

8 For a miracle

*1, 2, 4, 5 have been fulfilled

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