Sense of hope spurs Brighton mother

Melanie Robinson is stepping out to mark her deafblind son Josh’s 18th birthday.

She plans to walk from London to Brighton to raise funds for the charity Sense which has helped them both since Josh was born.

She still recalls doctors telling her 18 years ago that her newborn son Josh was deaf and blind as a result of congenital rubella syndrome.

Melanie had contracted rubella – German measles – before she even realised that she was pregnant. Having grown up in the Caribbean, she hadn’t been offered the vaccine that was given to girls in Britain from 1970.

Since 1988 the triple vaccine, MMR, has been used to try to immunise all infants. Take-up rates are lower than average in Brighton and Hove.

Melanie said: “So many people are anti the vaccine here but I’m very much in favour because of what happened to my son.”

In the 1970s the number of congenital rubella births totalled 447. The vaccination programme reduced this to just 38 in the 1990s. Rubella-linked terminations fell from 5,711 to 61 over the same period.

Melanie said: “When Joshua was a tiny baby I couldn’t put him down because the only way he knew I was there was if I was holding him.”

Her health worker put her in touch with the deafblind charity Sense. And her family – her parents Carlyle and Lucille and her sisters – all rallied round.

She said: “My parents have been fantastic. I’ve depended on them so heavily.”

And she praised the charity too, saying: “Our Sense worker was fantastic, showing me how I could begin to communicate with my son, introducing him to different textures so he could begin to distinguish different materials and feel the world around him.

“Now, 18 years later, Joshua is an intelligent and independent young adult and I know I can still pick up the phone to Sense when we need support or advice.”

The 38-year-old mother of three, who lives at the Brighton Marina, said that a cataract operation had given Josh a limited amount of vision in one eye. As a result, she said, her son was better off than some youngsters and had a positive outlook.

She said: “He’s not bitter about what life has thrown at him. He gets frustrated sometimes but he just gets on with it.”

She had the idea to dedicate the walk to Joshua and to raise funds for Sense when trying to decide on the perfect 18th birthday present.

She said: “I wanted to give Joshua a present that would be far more meaningful and special than a new gadget that would get broken and forgotten about.

“I’ve watched Joshua face challenges on a daily basis and wanted to set my own challenge to support other people with sensory loss.

“I’m not normally a walker so it’s definitely going to be hard-going.

“Sense have always been there for my son and have always been able to offer support or advice taking into consideration all of his sensory losses.

“With my son’s 18th birthday approaching, I decided to do this walk in honour of Sense who have supported us through his childhood and will continue to offer him support throughout his adult life.

“It’s my 18th birthday present to them for being there for him.

“Often there were no organisations or departments within the medical, social or educational sectors that were able to help with all of the areas of his needs.

“Few stop to think where the funding for charitable organisations comes from and often they are able to offer more than government or privately run organisations can. Added to which they offer it with care and compassion.”

Melanie is starting the walk from Bushy Park, Richmond, at 7am on Saturday (12 May) and plans to walk a 100km or 67-mile route to Brighton Racecourse. She aims to be there within 28 hours.

She said: “I haven’t been able to train as much as I would like because of all the rain.”

But she is looking forward to the final few miles, not least because that’s when Josh will join her.

Melanie has written about some of their experiences on her blog Single Mother Stories.

To sponsor her on her walk go to http://uk.virginmoneygiving.com/MelanieRobinson.