THE family of a Kidderminster baby who is one of just nine people in the UK to suffer from a rare chromosome disorder are getting the chance to meet the families of other sufferers for the first time.
Six-month-old Megan Ford has Trisomy 9 Mosaic (T9M), a disorder caused by having three copies of chromosome number nine in her body.
Megan, who has a twin brother Oliver, was diagnosed with the disorder at just seven weeks after she was unwell and struggled to feed. As yet, there is no cure for the condition.
Symptoms vary from person to person – in Megan’s case it has caused a curved spine and fused kidneys.
Sufferers of T9M are due to meet up on Saturday in Bootle, near Liverpool, which will also mark the launch of a charitable trust.
Megan’s mum Joanne, 32, said it was not only her and her husband Craig, 35, who were looking forward to the day.
“We’re definitely looking forward to the meeting,” she said.
“It’s going to be great for all us parents but there are also a lot of older children – either sufferers or their siblings – who are going and it will be great for them to join with others who know what they’re going through.”
The families of T9M sufferers regularly keep in contact through a facebook page – Trisomy 9 Mosaic Families – where families share information, pictures and updates.
Mrs Ford said: “We’ve spent a lot of time talking to families of other sufferers and it is such a good group.
“Without them I wouldn’t have known anything and would have found it much more difficult to cope.
“Just having the support online, where we can share experiences and share with others who know what we are going through, is great.”
Through the group, families of all nine of the UK sufferers have been able to communicate and share the experiences of their children’s lives.
Mrs Ford said: “We’ve seen so many pictures and it will be an eye opener for us to see the children in real life after only seeing the photos.
“From the photos we’ve seen, the other families have tried to make their lives as happy as they can. The children who have the condition all seem really happy but they don’t know anything different as they’ve lived with it their whole lives.”
The day is being organised by the mother of four-year-old sufferer Holly Kitchen. Holly brought wider attention to the disease after her brother, Louis, made a short documentary about his sister, which he uploaded to Youtube.
Mrs Ford said Megan had good days and bad days due to the condition. “Some days she is fine and on others she can wake up suffering,” she explained.