Story
I'm running alongside my Mam in the Great North Run. We aren't runners so will be plodding along.
Me and my husband Callum lost our Son Vinnie on the 28/03/2021 at 33 weeks and 6 days, he was born asleep.
Vinnie had half a working heart. My sister Nicola also had half a working heart. Nicola died at 6 weeks old.
Vinnie would of needed 3 open heart surgeries to survive through a palliative route. He had a 50/60% chance to survive to school age.
Due to my son and my sisters diagnosis I would really like to help Little Hearts Matter by taking part in this challenge.
This charity is very close to my heart because not only are they the only UK based charity specialising in single ventricle anatomy but they provided us as a family with a lifeline at a time when we desperately needed guidance and support.
Little hearts matter provide individuals living with single ventricle anatomy with a network of other families and offer them the support they need to deal with the daily struggles having half a heart creates such as teaching children how to use their energy wisely throughout the day (spoons of energy/ half a heart half the energy)
They run a weekly zoom youth club, run workshops for teens to teach them about their bodies with half a heart, provide parents with support groups through Facebook and a helpline, bereavement support, advice and guidance through treatments.
Little hearts matter are a national UK charity offering help to anyone affected by the diagnosis of single ventricle heart condition. The hospital actually informed us of this charity.
From initial antenatal diagnosis, through treatments and into life at home, the charity works with children, young adults and families to reduce the isolation, fear and lack of understanding created when a child is diagnosed as having half a working heart
The charities motto is Half a heart not half a life and they have definitely been a huge support to us all as a family.
Even in bereavement Little hearts sent us a book wrote by other bereaved families and sent us a card which was a huge comfort. The day after our babies diagnosis the charity rang us. They explained things clearly, reassured us and provided us with a network of other families.
We are now in touch with families going through similar experiences up and down the country.
We are in unprecedented and frightening times. Never before has the support, information and care provided by Little Hearts Matter been so urgently needed by the children, teenagers and adults living with only half a working heart. Every day they face the challenges created by their disability.
Coronavirus has just added to their isolation, fear, lack of understanding.At a time when their support is needed most, LHM are faced with losing vast amounts of income.Taking part in this challenge will raise funds to help them be there for families.
Please feel free to donate to and/or share this fundraising, Thank you for taking the time to read this and thank you for supporting this charity.