My beautiful daughter Mia (age 9) was diagnosed with Vascular Ehlers-Danlos Syndrome (Vascular EDS) in August 2021. 

Vascular EDS 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. Vascular EDS 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 Vascular EDS 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 Vascular EDS 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 Vascular EDS. 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

Bonnie and Mia had a very special surprise with a live appearance on ITV's Ant & Dec Saturday Night Take Away and received a well deserved 'Take Away, Get Away'.

Global Winner!

I am very proud to announce that this special photo is the WINNER of a global photo contest at my workplace.

Thank you to the amazing photographer Chloe Hardcastle and to all those who ran in support of us and made the event a success RUN4MIA was an incredible event to raise awareness and important fundraising for a very rare life limiting and life threatening genetic disorder, Vascular Ehlers Danlos Syndrome.

Strength is easy to find when you are trying to save someone you love and this photo enabled such a memorable moment to be shared which not only shows what teamwork resembles but it could also make a life saving difference in raising awareness of VEDS.

Sainsbury's Awareness

Mums on a Mission in Sainsbury's Chislehurst raising awareness of Mia's journey and Vascular EDS.

Cambridge Half Marathon Training

Mum Bonnie and Uncle Scott training for the Cambridge Half Marathon which takes place on Sunday 6th March with Team Annabelle's Challenge.

Bromley High School

Thank you to The Senior School at Bromley High School who came together in their support for Annabelle's Challenge.

“Lower Sixth pupil Hannah worked closely with Anabelle’s Challenge London coordinator Bonnie Jackson to organise the event. Bonnie was inspired by her daughter Mia, who herself suffers from VEDS.

To raise money for the charity, Years 7 to 13 pupils decorated their uniform with red accessories and bought wristbands and badges. Bromley High’s enthusiasm and involvement has made the day a massive success.”

MUFG Bake Sale

I cannot express my gratitude to my amazing friends today. Thank you to all those that have generously donated their time to take part, their delicious food and money today.

Thank you for your unwavering support to Mia in our efforts to raise awareness of Vascular Ehlers Danlos Syndrome and important funds for the amazing charity Annabelle’s Challenge.

We literally had everything anyone could ask for today!! Beautifully decorated cakes for Annabelle’s Challenge and Mia, pizza/paneer/vegetable samosas, spring rolls, professionally donated cookies and cakes, sausage rolls, mouthwatering home made cakes and much much more!! The display was beautiful… Chloe Hardcastle and Sandrine we did well!! Anna and Charlotte I wish you could have been with us today, all of your hard work really paid off.

We have raised nearly £550 today which is an incredible figure and this is with thanks to each and every one of you that contributed and took part.

Together we have achieved something so special, so important, that really will make a difference to people’s lives.

The running total of our campaign is now over £11,500.00!!

Thank you xxx