Today, February 29th is Rare Disease Day and one Ross family will be doing all they can to raise awareness of conditions many people don't know about. Ben and Anna's daughter Amelie Morgan is, they believe, the only baby in Herefordshire diagnosed with a rare genetic disorder.

Her gorgeous smile and happy personality are hiding the fact that Amelie has Prader-Willi Syndrome (PWS).

She was a very floppy baby and had great difficulty feeding. Anna told the Ross Gazette:?"She needed to be tube fed for the first eight weeks and she never really cries." However that is just the tip of the iceberg of the problems that little Amelie faces as she gradually develops the symptoms of PWS.

Named after the two doctors who first described the pattern of characteristics associated with PWS in 1956, it is a complex medical condition. There is nothing Amelie's parents could have done to avoid PWS. In 95% of cases it is not hereditary and can occur in any family, in their case a part of a chromosome was missing. There was no hint during the pregnancy that anything was wrong until Anna had to be induced as the baby was not moving very much.

Amelie was in the Special Care Baby Unit for two weeks and was diagnosed when she was just six days old. One in 15,000 people are born with PWS but the diagnosis is often not made until they are older.

At the moment Amelie is like most other young babies but her development is slower. Anna explained babies usually start walking when they are one, Amelie will probably be nearer two.

But she said:?"She is a very happy and content baby and her big brothers Oscar and Luca are always making her giggle."

Looking after a baby with PWS is hard work. Amelie has regular physiotherapy and also sees a dietician, a speech and language therapist and a specialist endocrinologist in Birmingham. Despite her condition she is doing well and although the family do not know what the future holds, they are hopeful that Amelie is on the lower end of the scale of the condition.

As they get older people with PWS are challenged by an untreatable, insatiable appetite resulting in almost constant feelings of hunger, together with immature physical and emotional development. Anna knows that even if Amelie can attend mainstream school, she will probably need support for her emotional development.

The family is desperate for more people to be made aware of the condition. Anna is a member of a group on facebook but has little contact with other parents of children of a similar age with PWS.

She said another problem is that although there is a lot of information on the internet most of it is outdated. She hopes that by talking about Amelie people will be more knowledgeable about genetic disorders such as PWS and will help with fundraising as at present there is no government funding into PWS research.

Local MP?Jesse Norman was alerted to Rare Disease Day by Amelie's parents. He said:?"Families which are affected by rare diseases can face many difficulties over and above the daily demands of the sufferer's condition." Jesse Norman continued:?"This is especially true in Herefordshire, despite our very good public services, because of the low level of funding we have historically received from central government.

"Sufferers may struggle to get an accurate diagnosis and, as the diseases are rare, often feel very isolated.  I hugely welcome the important work that Rare Disease UK and Genetic Alliance UK do to support sufferers and their families, and to raise the profile of these diseases, both on Rare Disease Day, and throughout the year."