HASLEMERE parents who suffered the shocking loss of their healthy 20-month-old son are now doing all they can to raise greater awareness of a little-known fatal syndrome.

Claire and Lee Smith were desperate for answers after their son Harry died without any warning in his sleep on April 6 last year.

A post-mortem examination suggested he had died of pneumonia but Claire had seen no signs of it. Genetic and cardiology specialists reviewed the report and believe it was more likely a case of the syndrome Sudden Unexpected Death in Childhood (SUDC).

SUDC is the death of a child of 12 months and older which remains unexplained after a thorough case investigation is conducted.

This must include an examination of the death scene, performance of a complete autopsy, and a review of the child and family’s medical history.

More than 40 children in England and Wales die every year as a result of the syndrome, but SUDC UK is the only charity nationally to raise awareness and funds for research.

Claire spoke of her loss to help raise the profile of the charity.

The SUDC Foundation in the US has named March an awareness month and is leading efforts to raise a greater understanding of the syndrome around the world.

Claire and Lee are hoping some of the samples taken following Harry’s death can be sent to the foundation for further analysis.

Determined to do all they can to make more parents aware of a fatal condition they knew nothing about themselves, Claire and Lee want to raise as much money as possible for SUDC UK in the hope the research it funds will discover any tell-tale signs that could prevent other families from suffering such a devastating loss.

The suddenness of Harry’s death meant they both had to go over what happened with police, social workers, doctors and coroners.

There was no indication anything was amiss on the day Harry died. He was his usual self when he settled down for his regular afternoon nap, while Claire did some baking in the kitchen below his room. But when Claire went upstairs to wake him, she found he had gone blue and wasn’t breathing. She ran to her neighbours to get help and continued trying to resuscitate him until the ambulance arrived and paramedics took over but they also failed to get his heart beating again.

When news of the shocking circumstances of Harry’s death spread, Claire and Lee were inundated with offers of help and support from Haslemere residents and businesses.

The last place Claire took Harry on April 6 was to Hemingways cafe in the High Street. After his death she “just wanted to go back to where we had sat”, but could hardly bear to go in.

She was grateful to the owners for their support in helping her get some closure and a close bond was formed, with Hemingways hosting a remembrance event after the funeral.

The owners of The Georgian Hotel were equally moved, and offered rooms free of charge for family and friends attending the funeral.

Grayswood Nursery, where Harry’s older sister Brooke was a pupil, are planting a fruit tree – King Harry – as a lasting memorial in the children’s garden.The Baby Sensory group that Harry attended will donate money from a ‘Super Heroes’ event and is sponsoring a Haslemere Hound for the cause.

Claire writes an online blog called Smile With Harry Bobo, where she regularly talks about her son, SUDC and how the family are coping. “When you don’t have the answers it’s so difficult to understand why such a pointless death happened to such a happy little boy,” she said.

“It was horrendous. It’s the worst thing that can ever happen to go upstairs and find your little one is not breathing. He was walking and talking – it was such a sudden loss.”

* To donate to SUDC UK, visit justgiving.com/fundraising/

smilewithharrybobo