Schoolgirl with rare disease becomes face of hospital campaign

A Walsall schoolgirl who is one of an estimated 20 people in the world to suffer from a rare disease has become the face of a hospital fundraising campaign.

Matilda Hatton, aged seven, has Sensenbrenner Syndrome, which means she has morphic facial features, shorter limbs and grows at a slower rate than other children. Little is known about the condition.

Her parents Les, 57, and Michelle, 38, who is Matilda’s full-time carer, know of only one other sufferer, in Canada.

Les, who is also a carer for his nephew, said:

Days after Matilda was born she was rushed from Stafford Hospital to Birmingham Children’s Hospital, where she has received treatment and has been monitored ever since.

It was there that doctors finally told Les and Michelle that they believed their daughter had Sensenbrenner Syndrome. They were told there were only around 20 sufferers recorded since 1975.

Michelle added:

Now Matilda is part of the Star Appeal by Birmingham Children’s Hospital, which is aiming to raise £3.65 million to fund a rare diseases centre at the site.

Her picture will go up in Victoria Square along with 11 other youngsters who are also suffering from a wide range of uncommon conditions next month as part of a fundraising exhibition.