MUM ON A MISSION BY BOnnie Jackson
My beautiful daughter Mia was diagnosed with Vascular Ehlers Danlos Syndrome in August 2021 at age 7.
VEDS is a life-threatening connective tissue disorder that affects 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 alone.
Mia was born five weeks premature and first started showing symptoms of VEDS at only five months 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 affects the clotting function of her blood. The symptoms can vary between patients, making 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 seven years of relentless battling to find a diagnosis within the NHS at top pediatric hospitals, it was only when I found a private genetic specialist consultant that we were given a VEDS diagnosis.
After 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 and filled my soul with a deep pain that I know will never leave me.
Annabelle’s Challenge is the UK’s leading charity for VEDS. It was a long, painful three weeks (day and night) waiting for Mia’s genetic results. The charity not only provided me with support, but they also made me feel like we were not alone in the world. 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. This support has grown exponentially ever since.
Since Mia’s diagnosis MumsOnAMission has raised over £15k for Annabelle’s Challenge to continue VEDS research. The experience is so unique and inspiring when we all come together to encourage each other’s efforts and immerse ourselves in a world of possibility, knowing that what we have set out to achieve is something bigger than ourselves.
I am very passionate about raising awareness so that both the public and professionals know more about this condition. Whilst living in the unknown, self-doubt can be brutally difficult, knowing that something is definitely wrong with your child but having people not understand the seriousness of the condition, nor providing a diagnosis.
Therefore an important part of the mission is to prevent and protect families/children affected by VEDS from adversity and challenges they may face on their own journey so that they too can be more resilient. I am a MumOnAMission, and I will never give up for Mia and for everyone affected by this cruel condition.
Mums…always trust your instincts.
Guest post by Bonnie Jackson, Rare Mama to Mia
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