Myself and Pamela would like to thank you for all the donations received so far.
I have set up this website on behalf Pamela who is arranging the mile in memory walk for what will be the fourth year.
The walk has been advertised again and further pictures will be published following the walk.
Pamela has arrnaged this walk not just for donations but for awareness of both FSID and Long QT.
A note from Pamela:
I know most of you may have heard about my son Jamie who passed away unexpectedly whilst asleep in his cot at just 10 months old, but in the 4 years since Jamie left and the 2 years that have passed since my 3 child Francesca (Frankie age 2 years) was born, I have been trying to protect my girls whilst trying to understand why Jamie left us.
For my sanity whilst pregnant I signed up to a programme called the CONI (care of the next infant) programme. This was a huge support emotionally for me and I took any help they were offering to guide me through my pregnancy and Frankie’s first 1 year.
Cutting the very long story short and after months of hospital trips Jamie has helped his sisters in more ways than one including me and other members of our family.
Frankie was offered an ECG because Jamie passed away suddenly and after much persuasion Jessica was given one too.
Jessica was asked to run on a treadmill and when cooling down she was the first to be told she has a heart condition called Long QT (Further information is attached if you would like to know more) there are the 3 main types of this condition Sudden Death being the worst case scenario. After a blood test Jessica was found to have the “Physical defective Gene” Once more after several discussions Frankie and I had bloods taken from us and we too carry this defective Gene. All 3 of us are now on Beta Blockers to regulate our heart rate. It will never be confirmed that this is how Jamie died but with the information I now have I can further protect the girls.
Long QT is gaining lots of press at the moment but I feel I need to do my bit to raise awareness too. Also quite alarmingly more than 300 babies are still dying every year unexpectedly and showing no cause as to why, which is why FSID also needs their profile raising.
This Saturday for the 4 year running we will be doing a mile in memory of my son Jamie. This year there will be about 130 people attending the mile walk through the village where we used to live, about 60 of these are young children (who actually ask me every year if they can do it again) hence the reason I have carried on!
We have had support from Tesco, Sainsbury’s and Asda in helping with the kids “well done bags” medals and certificates. We have also appeared in the local press online and in the paper. I am also currently waiting for a press conference with FSID trying to get Salford Reds (Rugby Club) s a sponsor. The press will attend on Saturday and Asda are also sending some support too.
These are other links you may be interested in or maybe you know someone that may find this useful.
Thank you for your time in reading this and for your kind donations.