Parents’ plea to help little girl with rare genetic illness

APPEALING ... Martin and Kerres Jameson are desperate to understand more about the condition afflicting their little girl Nancy.
APPEALING ... Martin and Kerres Jameson are desperate to understand more about the condition afflicting their little girl Nancy.
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PLAYING with her favourite toys, Nancy Jameson appears like any other little girl.

But the three-year-old has a rare genetic illness that affects just 200 people in the world.

The East Boldon youngster’s family are to jet off thousands of miles to find out more about her life-limiting condition.

Nancy suffers from a chromosome abnormality, which means she is unable to walk or talk.

The condition, 11Q Terminal Deletion Disorder, also causes mental and physical delays, blood disorders, facial dysmorphia, vision impairment, hearing and behavioural problems.

Dad Martin said: “None of the many doctors or consultants I have seen in the UK have ever come across anyone with this condition.

“They are unable to offer us much information on Nancy’s long-term future.

“Given the rarity of the disorder, we have no perfect figures on Nancy’s life expectancy, but the most telling information is that one person has reached the age of 40.”

Every two years, a medical convention is held in San Diego, California, where families from around the world affected by the disorder, also known as Jacobsen Syndrome, meet to share their experiences.

The world’s leading specialist, Paul Grossfeld, will also discuss his latest research and advice, providing updates on treatments such as life-saving immunology developments.

Earlier this year, Martin and wife Kerres, who also have a five-year-old son called Ned, set about raising the £7,500 needed to attend the convention.

Now, after donations from local firms, the couple are only £2,000 short of their target, with the trip scheduled to start in late June.

Martin, who works for a publisher producing business and industry magazines, said: “We have been bowled over by the generosity of the business community in these challenging economic times and thank everyone for their much-valued support.

“Because Jacobsen Syndrome was only identified in the early 1970s, information regarding the condition is still quite limited.

“This convention is a fantastic and unique opportunity for us to find out more and to meet other families living with the condition.”

The family is asking the public to send them unused US dollars to help with their fund-raising.

Anyone wishing to make a donation can email or call 519 1285.

Companies which have rallied to the cause to date include Fastflow, Greggs, SCS, Persuasion PR and John Gillender Photography.