A mum from Chislehurst is raising money for a genetic disorder which her seven-year-old daughter battles every day.
Bonnie Jackson, 33, first noticed daughter Mia experience symptoms of Vascular Ehlers-Danlos Syndrome at just five months old.
Mia has now been diagnosed with the rare genetic disorder which affects the blood vessels, arteries, and organs and can lead to life-threatening bleeding.
Bonnie says she found herself “battling” to find answers for Mia’s symptoms – which started as extreme fatigue and bruising and bleeding.
But due to the rarity of the condition, no one could distinguish what the underlying issue was behind Mia’s health.
It wasn’t until seven years later, in August 2021, that Mia was given a clear diagnosis of VEDS.
Bonnie said: “Mia started showing symptoms when she was five months old through a sickness bug that was identified through bruises on her stomach.
“The bruises were due to her stomach tearing because of the fragility of the tissue.
“It was only two years later we were told that she had a platelet aggregation or bleeding disorder which means the blood takes time to clot.
“From the age of two her symptoms worsened – extreme fatigue, heavy nose bleeds, further bruising and I noticed the exhaustion was going hand in hand with the blood issues.
“If she done anything that overexerted her, she would crash - becoming severely pale, darkened under eyes and then the bruising and bleeding, it was the same pattern.
“When she was aged two to five years old, she had back to back infections – pneumonia, influenza, bronchitis, all back to back and it would trigger the bleeding, the only way to bring her back up was to rest.
“I was in a world where I knew something was wrong and fighting every step of the way to get answers.
“Through the relentless battles and trying to find the answers, seven years later we finally had the diagnosis for VEDS.”
Since Mia’s diagnosis, Bonnie has become the London regional coordinator for Annabelle’s Challenge.
Annabelle’s Challenge is the UK’s leading charity for Vascular Ehlers-Danlos Syndrome, that helps promote awareness and raise money for medical research.
Annabelle’s Challenge was founded in 2013 by Jared Griffin, after his daughter, Annabelle, was diagnosed with VEDS at the age of three.
Bonnie told the News Shopper that herself and likeminded mums, known as ‘MumsOnAMission’ have been participating in Annabelle’s Challenge to raise awareness for VEDS.
MumsOnAMission, a campaign led by Bonnie and her best friend Charlotte, has raised more than £15,000 for Annabelle’s Challenge - with £12,099 of it raised through Bonnies JustGiving page.
Bonnie added: “From October 2021 we have raised over £15,000 for research for the cure.
“I’m running the Cambridge half marathon and we have plenty of people participate in marathons this upcoming year.
“I’ve visited businesses, barbers, beauty rooms, fish and chip shops, dry cleaners, taken part in carol singing, running half marathons and holding collection buckets, all to raise money for the incredible charity.”
Bonnie says she is “deeply passionate” about the REDS4VEDS campaign, as the aim is to make students, teachers, and parents aware of the condition that will “filter” into further job sectors.
Bonnie explained: “REDS4VEDS is quite simple – students wear red to support research for VEDS.
“So far, the campaign has visited two schools and the support we’ve received from communities in Chislehurst has been phenomenal - it would be great to expand the awareness even further.
“VEDS needs to be recognised by GPS, medical professionals, the education sectors, and across the board – including people in communities.”
Mia will soon be under the care of Great Ormond Street Hospital for children, where Bonnie says she has an “amazing specialist team.”
Bonnie said: “Alongside the genetic specialist, Mia will be supported by teams that monitor the fragility of the organs.
“Mia’s body is working hard all the time because of a gene that doesn’t work like mine and yours - her body is constantly fighting the pressure and runs the risk of her veins bursting.
“I’m speaking at the national VEDS conference in May, and it will be great to share the information I’ve found through Mia that will potentially help other families.”
Bonnie says herself, MumsOnAMission and Annabelle’s Challenge are continuing to help spread the word of this disease to help find the cure.
She added: “It’s hard to describe what you go through as a mum - feelings of knowing something's wrong but being powerless to do anything about it.
“But now, although we have a horrific diagnosis, we've got the possibility of doing something about it.
“I now have a job to help others, like I wish Mia had in her early years of life.”
You can donate to Bonnie’s JustGiving page here.
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