Mother's website offers holiday help for families with special needs

Rachel Shepherd was born with congenital heart disease which meant at 10 months old she had to have heart surgery.

When she was pregnant with her daughter Francesca, she was monitored very carefully, but when she was 32 weeks' pregnant the worst happened. She went into heart failure.

"Francesca was born at 36 weeks and needed special care for the first few weeks of her tiny life," explains Rachel.

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Although Rachel knew there was a risk Francesca may have developed her heart problems, regular scans throughout her pregnancy revealed no problems.

But as a baby she failed to thrive, suffering reflux which meant she couldn't keep the milk down. At one year-old and weighing just seven kilos, she suffered severe reflux and aspirated into her lungs. As a result, she got pneumonia which Rachel says wasn't treated properly by the hospital.

"She collapsed needing urgent treatment and was found to have septicaemia. Her body started to shut down and she went into renal failure," says Rachel.

She needed an urgent blood transfusion and dialysis and was rushed to Great Ormond Street Hospital. Nearly five weeks later, she was discharged but had high blood pressure. Two weeks later, she was back at GOSH with pneumonia having aspirated again.

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She had a number of operations to try to stop the reflux and allow her to thrive.

"In total, Francesca had 10 general anaesthetics in the first four years of her life," says Rachel. "We spent six weeks in Portugal where my family lives and she really started to improve but, unfortunately, she was found to have a displaced hip and had to have an 'Open Reduction' – traumatic open surgery to her left hip."

Francesca was in plaster for six weeks. She couldn't sit up for three months and took nearly another two years to walk.

Now nearly eight, Francesca has also had grommets, her adenoids out, her tonsils out, vitiligo and is tongue tied, which means she cannot communicate. Tests have revealed that she has a chromosomal problem which means she may never be able to speak.

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Her mother communicates with her using Makaton, a kind of sign language.

Rachel's own health still needs monitoring as she has had to have a pacemaker fitted.

"My health is under control but I still require specialist medication and, equally as important, I need to feel secure in my surroundings and confident in the medical services available to me."

Rachel, a former air stewardess originally from Ilkley, moved to the Algarve a year ago after her marriage failed. "I was living in the south of England and all my family were in Portugal. The weather also means that I can do more with Francesca."

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Both her own and her daughter's experiences gave her the idea for a new website somewherespecial.org.uk, to help inform visitors of amenities in the area and to promote businesses that provide facilities for disabled visitors and residents.

"There are many simple steps that businesses can implement to help people with disabilities," explains Rachel. "For example, when Francesca was unable to eat solid foods, we would ask restaurants to liquidise foods for her but not all had the facilities to do this. Also, there was a time when I didn't want to leave hospital because I was scared about being away from medical facilities and experts in case something happened to me. A website like ours will hopefully make people feel more confident about being away from their home and hospital.

"We hope this site will act as a one-stop shop for individuals and families with medical or special needs who are planning to travel to Portugal. We want people to feel confident, relaxed and secure on their holidays."

Rachel says she would like to see the Algarve become a new alternative holiday destination for people with disabilities. She is also in the process of starting a site for Yorkshire for children and adults who are unable to travel abroad or for activities for children with special needs or disabilities. It will include places that are accessible to stay, therapists, carers, restaurants and activities. Any business or therapist that wishes to have a listing on this site should email [email protected].

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As for Francesca, she is at school although does get frustrated at not being able to talk which makes it difficult to make friends.

"I hope one day that she will have some independence and would dearly love for her to be able to speak. But my main aim is for her to be happy."