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Raising awareness for Rett Syndrome (and the importance of flexible working)

by ParentalChoice
in Work life balance, Flexible working, Family, Children, Career
1 comment

 

 

 

 

FrankieRita Ross is Head of Diversity and Inclusion for Retail and Business Banking at Barclays. She is also Mum to two children, one of whom has severe disabilities. For her great childcare and flexible working initiatives have been vital in allowing her to meet the additional care responsibilities of a child with a disability and continue her successful career. Not only does Rita wear these two hats but she also runs a charity that is searching for a cure for her daughter’s condition, Rett Syndrome.

The word superwoman springs to mind but in reality Rita sees herself just like the rest of us, a working parent who is trying to do the best in both her worlds and keep all the balls in the air.

Here is a brief snapshot of Rita’s story:

I started as an office junior at the age of 17, straight from school. I never really intended to make banking my career but as I didn’t know what I wanted to do career wise it seemed like a good option in the short term.  I soon realised however that there an array of seemingly endless opportunities and career options available within the organisation and I am still here 33 years later.

I had my first child Cameron 12 years ago and took five months off on maternity leave before returning to work full-time. Three years later I had my daughter and following a normal pregnancy Francesca arrived a week early and only a couple of days after I had started my maternity leave. So much for putting my feet up for the last week or two before her arrival.

I was all ready to return to work after my 5 months maternity, as I had done with Cameron, but this time we decided to employ a nanny instead of using a nursery. The rationale here was to make our life easier as both I and my husband work full time.

It turns out it was the best decision we could have made as unfortunately a week before I was due to return to work Francesca started to have some strange jerking movements, with her eyes rolling back. We subsequently found out these were infantile spasms and could be the sign of something serious.

We were in hospital for a week and she was treated with steroids and subjected to numerous blood tests. We were told that all the results were

 negative and that although she would be kept under observation for the next couple of years it seemed that this was just a childhood blip. I returned to work as planned and life carried on as normal, or as normal as it can be working full-time with two young children.

Unfortunately, 3 years later, we found out that Francesca’s previous problems were not just a blip. Frankie started to miss milestones and was eventually diagnosed with Rett Syndrome, a rare genetic disorder, meaning she wouldn’t ever walk or talk and would lose purposeful use of her hands. She would need 24/7 care for the rest of her life. Understandably, we were completely devastated.

My first reaction was to find out as much as I could about Rett Syndrome and see if there were any treatments or ways to help my daughter.  It was then that I found out that the syndrome had been reversed in mice and there was indeed hope for the future! So as well as fundraising with friends, family and my colleagues at work I set up a charity to raise money for further research and I am now Chair of Cure Rett (http://www.curerett.org.uk/), an organisation that focuses on funding research as well as supporting newly diagnosed families living with Rett Syndrome.

Family - Parental Choice Ltd

In terms of how we manage now, we still have a wonderful nanny who helps with the care of Frankie as well as my son and this has meant I can continue to work full time as well as continue to help other families through the charity.

 

For more information on Rett Syndrome or the Cure Rett charity please visit www.curerett.org.uk

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  1. Anita martin

    You are so inspirational, I am inbetween roles at the moment due to redundancy. I start in a healthcare position in August, my previous role was a trainer presenting which involved engaging its groups, creating presentations, learning materials and educating people through advertising etc. My nephew is 19 and has retts syndrome, he has just left school and starting a new venture in adult services. I would love to be raising awareness and if there is anything I can do to support you or if you can give me any advice on getting started myself, I will be truley grateful.

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