On the 2nd May 2019 my baby boy Zachary got diagnosed with a rare syndrome called Marfan Syndrome followed by his younger brother Luis on the 28th October 2019

At first I felt like my whole world had fallen apart but after speaking to the genetics counceller I felt thankful that this has been found and not left undetected.

This is by no means a sympathy fundraiser but more for awareness status and a thank you to the NHS. 50% of people go through life with this disease undetected and we are ever so thankful to the doctor that spotted the signs

Marfan syndrome is a disorder of the body's connective tissues, a group of tissues that maintain the structure of the body and support internal organs and other tissues. Due to this the boys are under a lot of different consultants and have regular heart scans which they never question.

We don’t let Marfan Syndrome control our lives we adapt and the boys live a full happy life. They may be taller than others, They may be gangly and thin, and yes Zachs chest is different to others, they do get achey and tired a lot more easily than others and can’t always join in activities that their friends do! And have endless hospital appointments. But they are Amazing and deal with it like true Hero’s and make me the proudest mum in the Universe.

I tell the boys how awesome it is they have seen each others hearts from the inside.

If we can just make a few people aware and to look out for the symptoms, we have done our job. So many people are unaware they have the syndrome until complications happen.

Soooooooo to raise funds to help Marfan Trust carry on their Amazing work Zach had the idea one day of Abseiling down Anfield Stadium, the home to his beloved team Liverpool! Of course a parent also had to do this with him!!! Can’t say I’m not terrified, but if he can I can! He’s also taking along his Best friend Harry who has supported him every step on the way through his diagnosis and never made him feel different to others.

Little Marf Luis will be watching from the bottom, supporting us.

If he raises £10 I think he will be super chuffed!