Our Beautiful daughter Lily was recently diagnosed was a life threathing condition called Vascular Ehlers Danlos syndrome just after her 2nd birthday.

It is a rare genetic condition that affects her connective tissues, arteries and internal organs making them extremely fragile, putting her at risk of sudden arterial or organ rupture on a daily basis.

Since Lily was 5 days old she presented signs of bleeding in her stools and a large hematoma on her spine that couldn’t be explained. Over the last two years she had suffered several hematoma’s, unexplained bruising on her body, rashes, swelling in her joints making it painful for her to stand and a bleed on her skull.

We continued to push for an explanation, the doctors at Glasgow children’s hospital have been amazing and we finally got answers. Altho we were delighted to finally have a diagnoses it was not the answer we had been looking for. It has completely turned our life’s upside down and has been a lot to wrap our heads around.

As Lily grows, we are learning to navigate her condition, ensuring she gets the best care and quality of life possible. Thankfully, we have found support through Annabelle’s Challenge, a wonderful charity dedicated to improving life for those affected by vEDS through research, education, and support.

We would love to contribute to their vital work, helping other families facing this rare condition.

#AnnabellesChallenge

#RareDiseaseAwareness

Annabelle's Challenge is the leading charity for vascular Ehlers-Danlos syndrome in the UK. At the heart of the charity is Annabelle, a brave little girl from Bury who is the inspiration behind our challenge to raise awareness and support for patients and families affected by vascular EDS.