Inspiring Gateshead girl with rare disorder to take on Great North Run children events

Five-year-old Lola Maddick lives with Angelman Syndrome, a rare genetic disorder which affects the nervous system and causes severe physical and learning difficulties. The disorder affects around one in 20,000 births.

The amazing little girl is participating in the Junior and Mini Great North Run on Saturday, September 10 to raise awareness of the disorder and to raise money for the charity, Angelman UK.

Lola’s mother, Victoria Maddick explained Lola’s diagnosis, she said: “At first they thought she had epilepsy because she started having seizures. It took them four days to get the seizures under control. Eventually, the doctors told us she had Angelman Syndrome.” Angelman Syndrome can often be misdiagnosed due to similar symptoms with other disorders.

Living with the rare disorder can be incredibly difficult and the Maddick family have struggled, but despite all of this, Lola is a happy child.

Victoria Maddick said: “It was an uphill battle for two and a half years trying to get her seizures under control. We tried loads of different medications.

“However, one of the main characteristics is that she’s happy all the time. Just laughing and happy all the time. It does have its downfalls though. One Christmas, she broke her arm and I didn’t even know.

“One day she stopped using it so I took her to the hospital. She was laughing the whole time. I couldn’t believe it when the doctors looked at an x-ray and it was broken.”

The Maddick family have chosen to raise awareness and money for the Angelman UK charity due to the support they have recieved from the charity and from other parents of children with Angelman Syndrome. Victoria explains that since the disorder is so rare, the charity doesn’t usually get a lot of exposure.

The family plan to walk over the Junior and Mini Great North Run finish line together.

To support Angelman UK, please visit the website.