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Mia's Story

Mia's Story

My beautiful daughter Mia (age 7) was diagnosed with Vascular Ehlers Danlos Syndrome in August 2021. 

VEDS is a life threatening connective tissue disorder that effects all tissues, arteries and internal organs making them extremely fragile. Patients are at risk of sudden arterial or organ rupture. VEDS is a rare type of Ehlers Danlos Syndrome caused by an alteration, known as the COL3A1 gene. Only 740 people are estimated to have this condition within the UK.

Mia was born 5 weeks premature and first started showing symptoms of VEDS at only 5months old which have progressed as she has grown; including but not limited to significant bruising, severe fatigue, blood in stools, heavy nose bleeds, vein rupture and bleeding, hyper-mobility, body aches and pains.  

Mia also has a platelet aggregation disorder which effects the clotting function of her blood. The symptoms can vary between patients which makes it even harder to diagnose. 

As her mother I knew from a very young age Mia was having problems that were not ‘normal’; however despite after nearly 7 years of relentless battling to find a diagnosis within the NHS at top paediatric hospitals it was only when I found a private genetic specialist consultant that we were given a VEDS diagnosis. 

After the constant fighting for years for answers, being doubted, being dismissed, I never gave up for Mia. When I received the news I felt the world turn upside down, it completely broke my heart, my soul with a deep pain that I know will never leave me. 

Annabelle's Challenge are the UK’s leading charity for VEDS. It was a long painful three weeks (day and night) waiting for Mia’s genetic results. Jared and Christina from Annabelle’s Challenge not only provided me with support they made me feel like we were not alone in the world. Now we had found people that understood. We had people in our corner, Mia’s corner to help us on the next part of this journey.  

My mission now is to raise awareness of this cruel condition and funds to support Annabelle’s Challenge so they can continue their fight for Education, Research and Support to families affected.  

Please join us on this journey to make a difference,
Never give up, never give in and always always trust yourself. 

Thank you for your support. 

Best Wishes
Bonnie -
Mia’s mum x
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