Back in may 2005 i gave birth to a beautiful baby girl who at the time we thought was healthy , 24 hours later our lives changed forever we were told our daughter had severe congenital heart disease and was rushed to Glenfield Hospital where her diagnosis was made.
We were then told 3 weeks later she also had a genetic condition called 22q11.2deletion as you can imagine i was a total mess but had to be strong for everyones sake .
From that point on I always remember feeling isolated at the normal parent and toddler groups as my little one wasnt well and although support from professionals were second to none ,i always felt the need to smile and say my daughter was fine as no one would understand how i was feeling .
At a time when CHD affects around 1 in every 100 births having your child diagnosed can be an extremely distressing ,confusing and worrying time and families often look for someone who can help in any way be that talking to others or finding information to help them along the way , as many of our children face an uncertain future alongside trying to live our day to day lives .
After 6 years of major ups and downs with our daughter and many more to come i felt i was in a position ,i wanted to give something back to others in the community in the way of a support group for families of children with Heart conditions ,its been a long journey and a pretty lonely place to start with before i found a small network of families ,to which i must say have been amazing alongside close friends and family .
I also found that as a parent of a child with congenital heart disease (CHD) there were no local support groups in our surrounding area ,although there were many websites and groups that provided information and online support it was'nt quite the same as speaking to someone face to face ,who had been through similar experiences its the simple human touch that made it feel much easier to talk and to know those you spoke to would have been through a similar experience .
After speaking to the certain organisations they confirmed that the feedback from our area and surrounding areas were that families would welcome local support groups as many families felt isolated and unsupported on an emotional level and that some families lacked information and resources about thier childs diagnosis and areas associated with it ,especially where families didnt have immediate access to the internet .
Our main aim is to ensure local families who have children with heart conditions feel they are not alone and that they are welcome to come along for a chat and meet other families who share a common ground ,along with making sure they are able to access information and resources about thier childs condition and make them aware of the help and support that is available to them .
Along the way we have found that Not 1 charity alone has been able to provide everything we needed support wise ,so we are happy to signpost families to the areas best suited to each individual family ,to ensure they get the best support possible .
Hopefully by providing the community groups as well as the online and phone support we can help to stop families from feeling alone and isolated .
PATCHES Was launched in January 2011 and is growing by the day to support families & children with Congenital Heart Defects x
Our daughter is now 12 years old and after 5 open heart surgeries ,countless cardiac catheters plus other surgeries related to her genetic condition 22q11.2deletion ,she is still here and is as beautiful as ever she is my little miracle
So i have to say a big thankyou to my little girl and my admin team for support as this group would not exist if she hadnt been born and made me the person i am today ,
Thankyou Casey -Beau I love you xxxxxxxx