So on the 28th of April 2019 I will be running the London Marathon for a foundation very close to my heart, The CDLS Foundation. Anyone that knows me knows that I don’t do running..... and the only person that I would possibly do this for is my son Oliver.

Most of you will have never heard of CDLS (Cornelia de Lange Syndrome).... this was me until the 16th January 2018 when our life got turned upside down and we were told that Ollie may have this rare Syndrome.

Nothing prepares you for news like this, especially when it is about your 5 month old baby, and the fear and worries that take over your thoughts.

Luckily Ollie seems to have a milder form of CDLS and will hopefully be able to reach all the usual milestones that we all take for granted such as walking and talking etc. It will just take him a bit longer than others. However, even though he is mildly affected, CDLS comes with a lot of challenges that have and will continue to make Ollies life that bit harder. We have had to learn about a whole new world we never thought we would have to.

Unfortunately, a lot of other more severely affected children won’t meet normal developmental milestones and face a much more challenging life.

I honestly don’t know how we would have coped with everything so far if it wasn’t for the CDLS foundation. They have been so incredibly supportive, helpful and informative to us as soon as we made contact after Ollie’s suspected diagnosis.

The foundation however is only small.... it is solely run by volunteers including parents and professionals. CDLS is a rare condition and so much of the research out there is outdated and still needs to be done. The foundation funds on going research into the syndrome.... Ollie still doesn’t have a confirmed genetic diagnosis and it is only suspected he has it based on some characteristics and symptoms....new gene mutations are still being discovered as recently as February and we hope that the next lot of testing being done by the foundation itself will give us a confirmed diagnosis which will help us move forward.

As I mentioned, CDLS is very rare and the foundation is only small. It doesn’t have the exposure that many of the much larger charities have. Therefore any donation you make, however small, will make a HUGE difference and go a long way to helping families such as ourselves.

Thank you for taking the time to read this. This is going to be a huge challenge for me but will be incredibly worthwhile for every penny we manage to raise

Kimi x x