So full of life - but for such a short time

5:19pm Tuesday 26th February 2008

Comments (3)   Have your say »

By Sarah Jones »

IT has been just a few months since they received the worst news imaginable.

But to Sabrina Balram and her partner Jon Parker, it seems more like a lifetime ago.

Their beloved bouncy baby boy Sonny was diagnosed with an incurable illness on October 31, 2007.

On that day all their dreams for the future were shattered and their hearts broke C and the nightmare that is now their day-to-day reality began.

The couple were told that their only child had Duchenne muscular dystrophy. Never heard of it before? Neither had they.

Yet, as they were to soon find out - devouring every piece of information they could find as they spent hours scouring the Internet - it is a devastatingly debilitating condition.

Holding their baby in their arms, it was impossible to comprehend what they were being told. He had a muscle wasting condition that affects one in 3,500 boys.

By the age of three or four Sonny would have difficulty standing up.

By his teens he would be in a wheelchair.

And by his 20s, he would be dead from respiratory or heart failure.

The dreadful diagnosis followed months of tests which had began after Sonny, quite coincidentally, developed dehydration for a short time after he was born It was such a shock when we found out, says Sabrina, 29. He was so healthy that we couldnt imagine anything else for our beautiful little boy. From that moment on everything changed so quickly. It just went really silent and I had to sit down. It feels like years ago that we found out.

Full of beans, Sonny is a happy, lively baby who loves swimming.

His brown eyes shining, he is in to everything - tugging on my legs and racing over to try to explore the contents of my bag almost as soon as I arrive at the family's Woolston home.

His parents look dotingly on, Stop it Sonny! they chide with a smile.

At just over a year old, he is like any other child his age - he is just starting to take steps and will soon be walking.

Yet every achievement he makes is bittersweet for his mum and dad.

For they know that all too soon he wont be able to do these things any more thanks to the cruel disease which is caused by the lack of a protein called dystrophin.

In the morning when you wake up, you feel happy for a second but then you remember, admits Sonny's mum, who is still struggling to absorb the news.

"It is constantly in my thoughts. It is devastating and heartbreaking - we are finding it very difficult to cope with. He is going to be so active and so full of life but for such a short time."

As silent tears roll down her face, she looks across at Jon before she continues.

"We have tried putting it out of our minds but it just doesnt work. He is so important to both of us. He is the only baby we have and we will treasure him. We will do whatever we can to help him. Even though we are falling apart inside we wont let him know."

Wiping away her tears, she ignores her distress and carries on - something you sense she has got used to doing in the past few weeks. "We are all treating Sonny normally because there is nothing wrong with him. He is very naughty, he loves people and getting into everything he shouldn't.

"It is so difficult to imagine that something will happen to him. If it was a problem with his kidneys, we could give him a kidney but there is nothing we can give him to make him better."

Duchenne, which affects only boys with very rare exceptions, is usually passed from mother to son, but it can also be caused by a new mutation in the child's genes.

Sabrina will take a test to find out if she is a carrier in a few weeks time.

If the results are positive there is a one in four chance that her next son will contract the disease.

"If I am a carrier, we won't have any more children because it is not fair", she says. It is too devastating and we wouldn't put another child through this. Even if we had a daughter, there is the chance that she could be a carrier.

In the meantime, the couple who plan to get married next year, are hopeful that they will still be able to fulfil some of the hopes they had for Sonny.

"Jon wants to play Army in the New Forest with his son," smiles Sabrina.

"We want to be able to run along the beach with him and go travelling."

Resolutely she says: "It shouldn't stop us."

Her voice wavers and after a pause she continues, "but our hearts are so heavy with emotion. When we see him playing its so heartbreaking and we start to cry our eyes out because there's nothing we can do about it."

Oblivious to his parents pain, Sonny - who loves Thomas the Tank Engine and SpongeBob SquarePants - is now whizzing happily around the dining room in a plastic car.

Looking at his boy, Jon, 33, adds: "We know we have to be strong for Sonny but every day it's in the back of our minds that he is going to die young.

"When we found out, we cried our eyes out. But we said if we hadnt had him, life would be so much poorer.

"We have so much fun with him."

With no cure on the horizon, the couple are keen to raise money towards research into the disease.

There have been many advances in themanagement of Duchenne in recent years and progress continues to be made.

"For me its a way I can tackle the unchangeable," says Jon, who is planning a charity cycle ride across the Pennines.

"It's feeling as if you are doing something. I am going to buy a little seat for the back of my bike for him, hell love it."

Tragically, research is being stalled by a lack of Government funding.

The couple are disgusted by the fact that more is not being done to help their plight.

"These are childrens lives," says Sabrina. "I dont understand why the Government is allowing this to happen when it could do something about it."

United together, the couple are determined to stay strong for their son and have received a lot of support from family and Duchenne action groups.

Looking towards the future, housing project worker Jon - who is now pushing Sonny back and forth in his pushchair to get him to sleep - says: "We enjoy every moment we have got with him.

"We are going to experience things together in the future; he will have a great life and he will never want for anything.

"It's going to be fun. It's going to be heartbreaking.

"But we're positive."

To find out more about the disease or to make a donation, visit actionduchenne.org.

Anyone in a similar position who wants to contact the couple can e-mail sonnysmum78@yahoo.co.uk.