December 16, 2014
For the last three years I have been feeling led to start a foundation to aid in the fight for better adult care of Congenital Heart Survivors; I say 'led' because I felt that God was asking me to do it... and my answer was always 'No, I can't'. I am not sure if you know what it involves (even I don't know the extent of it...) but it takes a lot of 'seed' money and lawyers and buerocracy that I know nothing about. It was/is overwhelming to me so I continued to shut the idea down. Money alone stops me, forget all that red tape stuff. So I have moved into the 'mother volunteer' role and it's been serving me well, serving the agencies well, and hopefully one day serving Josh well. However, this past year the answers have become increasingly clear. I want to do more than be a bystander to Joshua's future; I am simply not satisfied with waiting for others to get the job done. I want to be at ground zero, on the front line; I want to be a part of making it happen. I have learned a lot about the health care system, I have discovered the amazing things that are happening, and the awesome things that are about to happen. I am learning daily about the specialty of Congenital Heart Defects, and how incredibly hard they are to treat. I am also learning about all the problems, the setbacks, the stumbling blocks that face Josh and his peers in the years to come, if nothing gets accomplished now to change that for them.
My dream, shared by some key people is to have a Heart Institute within the walls of Sick Kids that treats all Congenital Heart Defect patients. Pre-natal, pediatrics, and adults alike. All patients, one model of care, one building. It would be a first, it would be a ground breaking project and it would forever change the face of medicine, particularly in this field.
The first steps are baby steps, reaching out to parents of CHD kids, sharing with them the key problems that face our kids, talking with our government officials, asking tough questions of the government and boards of the hospitals. It isn't going to happen over night, sadly it may not happen in my lifetime without a LOT of support from key people... people like you, people who have read about Josh's story and been touched by it.
A few weeks ago I once again entertained the idea of starting a foundation, with the key mandate being to aid in this endeavour. Once again the same issues arose... but then I had a thought, God inspired if you ask me. I could start up a third party organization under the umbrella of the Sick Kids foundation. The name even came to me on the spot... Joshua's Hope. I contacted my rep at Sick Kids and asked her about it and received a green light... and before you know it, here we are!
Joshua's Hope will raise awareness about the growing issues surrounding adult care for kids like Josh, and the money we raise will go directly to the highest priority needs of the Labatt Family Heart Center at Sick Kids Hospital, my aim is to help fund the little projects that will lead to the larger project of this Heart Institute. This is a huge undertaking, it will require skills that I didn't know I had but will have to come up with, it will require the help of some good volunteers, and yet, I know that it can happen.
I haven't put together all the little bits and bobs just yet, with Christmas on the horizon I have decided to wait until the new year to think about websites and things of that nature but I urge you to visit our donation page on the Sick Kids foundation website (Joshua's Hope). I also ask you to share this with your social media contacts so that we can start getting the word out. Your help in this is both greatly appreciated and SO necessary! I really can't do this without you.
Hope for their lifetime starts today,