Our Children Have Cockayne Syndrome


Women Who Want It are powerful individuals in their own right.

They are empowering, confident, inspiring and fierce individuals who rise up against any challenges they may face and take the reigns of their own life whilst always remaining classy and fabulous.

These are the type of people you want around you because they simply ooze positivity and motivate you to be your best self.

I am too excited for words to introduce this new section to the Blog and make you aware of some amazing women in my little corner of the internet.

To kick it off I would like to introduce you to a wonderful friend of mine all the way back in the UK and her adorable family.

This is Jodie, she is 28 years old. And this is her family; husband Luke (30) and their three children from right to left, Ella (8), Alex (4) and Chloe (1).

jodie 3  luke 2

Ella and Chloe have a rare degenerative condition called Cockayne Syndrome which tragically shortens their life expectancy to around the age of 12.

I don’t think there is a day that goes by when Jodie and her antics don’t pop up on my Facebook feed. If she isn’t busy raising awareness about the disease and spending time with other families impacted by it, she is shaving her head, skydiving or training for the Tough Mudder event to help raise money to kit out a special sensory shed. A sensory shed that will be a real life play area for the girls as they reach the later stages of the disease and start to lose their hearing and sight.

jodie 1


1) Tell us a bit about yourself
I’m Jodie, 28 years old, full time mum/carer to my three children. I enjoy their company and love being a mum as it’s very rewarding. I have been with Luke their father for 11 years and married for 6 years this year. I used to design estate agent brochures for a living but now I am doing a course in event and wedding planning.

2) Describe yourself in 3 words  
Caring. Strong. Determined.

3) How has your life changed after having your beautiful kiddies?
My life changed the minute I held Ella in my arms and I felt love for someone like I’ve never felt it before and that love grows stronger each time. I became selfless, putting other beings before myself and I became more confident like it was me and the kids against the world. After their diagnosis my life changed again, I live everyday one at a time, I appreciate the little things and don’t stress over silly things like the house being spotless. I make the most of the day with my family. I challenge myself to do things I never thought I would and anything I think would be fun I’ll go do it instead of waiting until next year! I’m not worried about having the latest trends or fancy cars, I want memories.

4) Describe a typical day for you.
I don’t really get a typical day with the girls and their appointments at the hospital or something for charity but one of the easiest days for us is up at 6:30am getting everyone ready for the day. Ella goes to school at 9am and then off to Alex’s Playschool for 9:30am, then it’s me and Chloe. We try and do something on the morning before lunch. It could be seeing someone like grandma or the library for a reading session and then it’s home for lunch. Chloe has a nap usually after and then it’s time for me to get the ironing done, any paperwork, phonecalls or housework that may need doing. Chloe is usually up around 3pm so we get ready to go and get Alex early from playschool so we are back in time for Ella. Then it’s a snack for the kiddies and sorting out any school/playschool stuff ready for the next day. Cooking dinner is next, then it’s pjs, showers, stories and bed by 7pm. Now I can tidy all the toys away and then I get to do my exercises, cool down, shower and get to bed myself.

5) What do you do for Jodie; what makes you happy?
I exercise for me. It keeps me focused, healthy, in good spirits, helps with my mood and how I deal with things.

6) Who do you look up to and why?
I couldn’t name anyone in particular as I look up to many. People that get up and achieve what they want to, people that don’t expect it on a plate, who work hard whether it be in the work place or at the gym. Those who live out their dreams. People like that inspire me.

7) What does being the best version of yourself mean to you?
Being the best version of me means everything – it keeps me humble, keeps me strong and keeps me focused.

8) What are 3 random things about you?
I have sung at the Royal Albert Hall.
I used to be one of the girl racers at Southend Sea front and got to drive some amazing cars.
Jelly freaks me out!

There is no cure for Cockayne Syndrome and Jodie and Luke have already had to plan out their girl’s funerals. The strength they both show can’t ever come close to being described in words.

Thanks so much for sharing your story Jodie.

If you would like to make a donation to the sensory shed then please do click on the link here.


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