A couple whose baby died from a rare neurological disease are living in hope that one day a cure can be found, as JENNIFER BELL reports.

HEARTBROKEN parents have told how their “beaming” baby boy died at only eight weeks old, and say they hope a cure for his rare disease will one day be found.

Elliot Granger collapsed at home five-and-a-half weeks after he was born, suffering from Spinal Muscular Atrophy (SMA) Type 1, an incurable condition that attacks muscles and nerves.

His parents Louise, 31, and Simon, 30, say they fought through their heartache to ensure every moment of the last weeks of Elliot’s life counted, and say they now plan to raise awareness of the illness Mr Granger, who was born in Strensall and is a captain in the Royal Engineers, said being told about Elliot’s illness left him and Louise, an HR officer for Persimmon Homes in Fulford, “distraught and with unimaginable loss in our hearts”.

He said: “There are no words to describe how we felt – it was hard to believe, especially as we had never heard of SMA.

“But we decided that, rather than being upset, we would make whatever remaining time Elliot had left with us as enjoyable as possible for him.”

Mr Granger said: “His brave character really showed with his alert manner, where he wanted to see everything which was going on. Elliot’s eyes would follow us wherever we moved, especially when we began singing nursery rhymes, and it soon became clear from his facial expressions which were his favourite.

“We would move his legs and arms in time to our singing and Elliot enjoyed Row Row Row Your Boat, The Grand Old Duke Of York, Incy Wincy Spider and Twinkle Twinkle Little Star.

“He developed a fan club with the nurses on the ward, where we later learned they would be requesting to look after Elliot days in advance.”

Elliot was born on December 7, but Mr Granger said that a few weeks later “the colour flushed from him and he slumped down”.

Hospital tests were carried out, but his condition deteriorated and he needed help to breathe, before being moved to a high-dependency unit at Alder Hey Children’s Hospital in Liverpool.

The day after he arrived there, doctors gave their initial SMA diagnosis, and it was confirmed three days later by blood tests.

During his two and a half weeks at Alder Hey, Elliot’s parents resolved to “do things any parent would do with a child when they are growing up”, including making handprints and footprints with him.

Mr Granger said Elliot “absolutely loved” bathtime.

“His whole face would light up as he entered the water, enjoying every minute even when he was covered in bubbles and his mum was scrubbing his face with his flannel.

“It was during times like these where the three of us could block out where we were and enjoy bath time with no monitoring or breathing equipment to get in the way. I will always remember his beaming smiles and when he started to copy my mouth movements, especially when he would poke his tongue out back at me.”

After a fortnight, Elliot was taken off a machine to help his breathing as it was “uncomfortable and distressing for him” and was not stopping the loss of his muscular functions.

Mr Granger said the youngster then became more relaxed and he and Louise were able to spend many hours cuddling him.

The couple had lived near York before recently moving to Warrington, and Elliot spent his last days at Claire House Children’s Hospice on the Wirral, where his father said he responded to sensory equipment and “would spend time with his head cuddled against my shoulder looking at the lights as they moved around.”

He died on February 4, holding his parents’ hands “in the way he loved to do”.

His funeral was held at St Mary’s Church, East Cottingwith, near York, last week and collections were held for Claire House and the SMA Trust.

Mr Granger said: “We hope that, if it can be continually funded to support the ongoing research, we may one day find a cure.”

SMA - the facts

• SMA affects about one in every 6,500 babies, with about 100 new cases diagnosed each year in the UK.

• The motor neurons mainly affected are those which enable walking, crawling, arm and hand movement, head and neck movement, and swallowing. The muscles used in breathing can also be affected.

• SMA Type 1 is the most severe condition. Its effects are seen within the first six months of a child’s life, and it can affect babies before birth. Mothers often remember their child becoming less active towards the end of pregnancy, and within a few weeks or months of birth, babies become limp and floppy, unable to lift their heads or sit unsupported and having difficulty rolling over and feeding.

• It is almost impossible to put a life expectancy on a child suffering from SMA Type 1 as different muscles are affected. Many parents are told SMA Type 1 babies can live for up to two years, but about 80 per cent die before their first birthday.

Raising awareness

SPINAL Muscular Atrophy, for which there is no treatment, affects the motor neurons in the body, preventing proteins from reaching muscles effectively.

Simon and Louise Granger are looking to raise awareness and funds for The Jennifer Trust for SMA, which supports families of affected children, and the SMA Trust, which is aiming to raise £2 million for research.

A pre-birth test known as chorionic villus sampling can be carried out, normally after ten to twelve weeks of pregnancy, testing the embryo’s DNA, but it is not currently available on the NHS unless the parents have already had a child with the condition. The test allows parents to decide whether to go ahead with the birth and the distress of watching their child deteriorate and eventually pass away.

A petition has been set up seeking to bring the issue to Parliament and promoting calls for every woman to be offered free genetic screening. It can be found at http://epetitions.direct.gov.uk/petitions/25997

More information can be found at jtsma.org.uk and smatrust.org