THE AA headquarters building in Basingstoke glowed blue and pink this week to raise awareness for a youngster who has been diagnosed with a rare condition.

One-year-old Lola Seagar from Basingstoke has been diagnosed with Pontine Tegmental Cap Dysplasia, a rare neurological disorder that is believed to affect just 40 people worldwide.

The building glowed with bright colour on Monday, February 28 as part of an international effort coordinated by the charity Rare Connect aimed at raising awareness globally for people suffering from the genetic disease.

SEE MORE: AA headquarters to light up for baby Lola who has a rare condition

The campaign culminates every February on Rare Disease Day when buildings around the world are lit up for one evening. Buildings that have been lit up on previous Rare Disease Days include the leaning tower of Pisa in Italy and the Empire State Building in New York. 

Lauren Alston, Lola’s mum, said: “Fanum House looked amazing, and I can’t thank the AA and Zeal enough for their incredible support. Edmund King OBE, president of the AA, joined the family as the building was lit up in blue and then pink.

“Lola is a lovely happy little girl who has just celebrated her first birthday. Her diagnosis was a complete shock for us all and we know we have many challenges ahead. Only the other day we were told Lola will have to be fitted for splints on both her legs.

“I would like to also thank my family, friends and Basingstoke Hospital, where Lola was born, for all their help as we come to terms with her condition and the support she will need going forward.” 

Lola’s condition is a debilitating genetic disorder that means she will always need a very high level of care. It leads to a variety of medical and developmental problems including hearing impairment, feeding and swallowing difficulties. 

Jon Ellis, head of property and facilities management at the AA, added: “The AA is delighted to help raise awareness of little Lola and support her family by turning Fanum House blue for the evening. Our president and CEO are supportive of this initiative and we will be explaining the importance of Rare Disease Day to all our employees.

"Coincidentally we believe that Lola’s grand-mother and great-grandmother both worked for the AA. Rare Disease Day is a great initiative offering support to the parents and children affected by rare diseases such as PTCD.” 

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Steve Hough, managing director of Zeal who lit up the building said he was excited to be part of the campaign.

He said: “It is fantastic that we can use our resources and the skills of our team to make a difference in this way. We hope lighting up Fanum House will help Lola’s family get the help and support they need to provide her with the best possible care.” 

You can read more about Lola’s story, here: rarediseaseday.org.

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