UPDATED: Entire street lights up to help disabled Frankie

Brave Frankie Ross, 11, of Castlemead, Pitstone, was diagnosed with Rett Syndrome, a rare genetic disorder affecting physical and mental development, when she was just three years old, requiring hydrotherapy to help her muscle tone and movement.

So when her caring neighbours in nearby Church Road heard that her parents were looking to buy a hoist, as they were struggling to lift Frankie into her special hot tub now she was getting older, they chose to help the family raise £2,000 via their annual street light display.

Tracy Clare, event organiser, said: “This is the 20th anniversary of our Church Road Christmas light switch-on and we wanted to do something extra special to mark the occasion. Everyone in the village knows Frankie, and we asked her parents how w could help them. Frankie and her family have been down to see the display, our most outrageous light up yet – there’s even a rocket!”

The Christmas lights were first switched on Friday, December 9, with houses down Church Road, twinkling away from 5pm - 10.30pm every night, and a festive mulled wine served outside for visitors on Saturday 17 and Sunday 18 to help raise more funds.

The display includes extravagant tree decorations, cute animal displays, and a very special rocket which emits smoke as it ‘takes off’, all in aid of Rett Syndrome.

Frankie’s mum, Rita Ross, 53, said: “I’ve been absolutely overwhelmed, because there are so many good causes out there to support but to make it about a little girl is just wonderful.

“Christmas is Frankie’s favourite time of year and she loved seeing her face on the banner that’s been put up!”

Rett Syndrome is a random mutation on the x chromosome affecting mainly females and very few males. It can cause loss of hand use, epilepsy, scoliosis, breathing and swallowing difficulties, as well as affecting speech and language development.

Those affected appear healthy until around the age of two, when symptoms begin to arise, with Frankie’s parents noticing that something was wrong when their daughter was two and a half.

Children can appear uninterested and disengaged, sometimes having a tendency to scream, as well as displaying unusual hand activity, clasping and tapping their hands as they begin to lose use of them.

Rita said: “Frankie’s co-ordination was poor and her speech was not as developed as other children the same age - at first we just thought she was a bit slow.

“But she didn’t display symptoms of disengagement - she’s still very engaging now.

“When we got the diagnosis we were devastated; for me, it was like a parent’s worst nightmare. Everyone wants their child to be healthy; every parent has dreams and hopes for their child. We were devastated to hear and read about Rett Syndrome but we decided as a family that we’d make something positive come out of something negative.”

Rita and her husband Gavin, 44, wanted to raise awareness of Rett Syndrome, ‘so people wouldn’t be frightened, asking ‘what’s wrong?’, so they held a party in Pitstone Park, now an annual occurrence, to let people know what the condition was.

Rita even started a charity with other parents called Reverse Rett in 2009, and although she has since come away from the project, the charity now has paid employees who work to secure funding for research.

She said: “More people say ‘hi’ to Frankie in the street than they do to me! Having people talk to her makes such a difference. Frankie is really engaging and it is important to talk to her so she feels like a person and doesn’t feel excluded.

“Our daughter is a really happy, giggly girl who loves school and gives the best belly laughs and hugs.

“The hydrotherapy is so important and Frankie loves the water. I want to say thank you to everyone - things like this restore your faith in humanity!”

Frankie goes to Stocklake Park School, Aylesbury, and lives at home with her brother, Cameron, 15.

She can still walk, but has the beginnings of scoliosis, and the family often take a wheelchair for her when they go out and about.

She also has a computer with an ‘eye gaze’, meaning the computer screen can track her eye movements and Frankie can use a programme to build sentences for the computer to speak.

She can say a few words, including ‘mumma’ and her nickname, ‘doodle’, and absolutely loves musicals.

The lights will be on every night until the end of December and a donation point is located down Church Road.

So far, £636 has been raised for a hoist.

To donate, visit: https://www.youcaring.com/find-a-cure-for-frankie-and-rett-uk-674111

For more information, visit: http://www.reverserett.org.uk/ and www.rettuk.org