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We want little Otto to be like brother

PUBLISHED: 09:45 31 October 2008 | UPDATED: 12:09 03 July 2010

The Smith family is praying that Otto will grow up big and strong like his brother Sam

The Smith family is praying that Otto will grow up big and strong like his brother Sam

Liz Coates

A family have been told that their three-year-old son needs the same life-saving heart transplant that his big

brother had to undergo two years ago.

Otto Smith's short life has been dogged by a rare genetic condition, diagnosed at 18 months old when older brother Sam was told he needed a new heart and that four other family members carried the same ill-fated gene.

A family have been told that their three-year-old son needs the same life-saving heart transplant that his big

brother had to undergo two years ago.

Otto Smith's short life has been dogged by a rare genetic condition, diagnosed at 18 months old when older brother Sam was told he needed a new heart and that four other family members carried the same ill-fated gene.

His parents, Isabel and Richard Smith, of Browston, had hoped to stave off surgery for Otto until

he was older but are now enduring

the stress and anxiety of

waiting for a donor organ for the second time.

Mrs Smith, 37, who also has the disease, said Otto's deterioration was devastating but she was buoyed by Sam's remarkable progress and

by innovations in the available treatment.

His dilated cardiomyopathy led

to a heart transplant at the world-famous Great Ormond Street children's hospital in London two years ago.

Now 17, Sam is starting a hairdressing apprenticeship and living a normal life aside from his dependence on anti-rejection

drugs.

In contrast, Otto's life is on hold. He has little energy to play, and the risk of infection keeps him away from his chums.

It is the second time that family and friends have had to rally round to help, and this time Otto's condition is so serious that both parents have had to turn their backs on the family building business to become his full- time carers.

Mrs Smith said: “At the end of the day, the children come first.

“I look at Sam and he is a new man. Someone has given him the opportunity and, hopefully, that will be the same for Otto.

“We knew he had been poorly, and doctors talked about a heart transplant, but at the back of our minds we hoped he would pick up.

“We have been trying all year to

keep him away from this, but his

heart is just too weak: it's as simple as that.

“His valves are leaking as well as his heart being dilated.”

Because Otto's heart is so enlarged he can accept an organ from a donor aged up to 11, but doctors have warned he may have to wait as long as a

year.

In the meantime, if the condition cannot be controlled with drugs he will have to go on a Berlin machine - new apparatus which wasn't available to Sam - that takes over the job of the heart but means he will have to stay in hospital in London.

“It's been horrific and really hard on the whole family. We did not expect it so soon, and it's hard to think that someone else has to lose a child to

help us.

“He cannot run about or go to nursery because of the risk of infection. It will be nice to see him get back the quality of life he should have.

“Life is very limited for him at the moment and he is very tired.” Mrs Smith added.

Otto needs a cocktail of 12 syringes of drugs a day and frequent tests to monitor his condition and adjust dosages.

The family is keen to highlight the work of Great Ormond Street and ward 10 at the James Paget Hospital, as well as to urge people to talk about organ donation.

Sam's successful treatment sparked a fundraising drive locally, raising £14,000 via a skydive by stepdad Richard, 40, and a fun family event at Gorleston's Ocean Room.

At the moment the family are on a 24- hour alert while they wait for a donor heart to become available, mindful that with Sam they suffered several false alarms after dashing to London under a blue light only to discover the heart was unsuitable.

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