I've got a couple of big pieces of news this week and I'm not even sure how to start if I'm honest.
I'll bank one bit of news for later this week it's no less important, in fact it's pretty exciting really but you'll have to wait!
So last week saw a lovely 2 days in London for Ian and I, we took a bit of time out for a wander around the Capital and saw Les Miserables which was AMAZING. We also stopped by to say Hi to everyone at The Lullaby Trust.
We returned home Thursday night and I found myself with a lovely day off work on Friday to catch up and that's when the postie delivered an unexpected letter.
A few years ago we were asked to give our permission for Alexander's slides and samples to be used in a research study funded by The Lullaby Trust into 'The prevalence of Long QT gene variants in SIDS'.
Although I have thought about the research we hadn't heard anything and I suppose we forgot about it assuming that if there was something to tell they would be in touch. What I hadn't realised is the time it takes to conduct such a study from gaining the families permission to collating results to contacting the families with any results, it's not a quick fix and certainly takes years to collate all the findings.
I didn't know that the study was near to any results so when we received a letter from Sheffield Teaching Hospital, where the study was conducted, it came completely out of the blue and knocked me for six.
The letter told us that the study revealed that Alexander did have the variant in his DNA and that this could be the reason for his death. I can't tell you how massive this news us for us. For 8 long years we've lived with not knowing and now we could have an answer. I cried all day, I was a mess, I can't quite believe that after all this time we might know what killed our precious little boy.
This just goes to show how important a role research plays for families like ours, that eventually there may be an answer, all we need is for someone to take the opportunity and go that extra mile.
The next step for us is found out more about Long QT and why Alexander has the variant. It could be that the changes just occurred in Alexander for the first time or the changes could be present in either Ian or me or both.
This could then extend to my other boys, if we know what it is we can take steps to prevent it happening again, if it's just a one off then we learn to grieve over again.
Long QT is very rare occurring in 1 person in every 2000 to read more here is a link to the NHS website NHS -LONG QT
I think I'm still in shock and know we are only at the beginning of our newest journey, as we move forward I hope to blog about it and the results.
Who knows why Alexander reacted the way he did to Long QT and why we had no indication anything was wrong but going forward this maybe something that Professor Neil Sebire can answer after his research project. He is looking for the XFactor in all these children, why when combined with other factors do they react so severely and leave all their families reeling. That's just a short explanation of what he's trying to achieve but believe me it's much more complicated than that!
Thank You all for being on this journey with us for 8 years, for all the money donated and raised for us over this time. This isn't going to stop, there are so many families who may never know unless we keep ploughing away. We are the lucky ones now we need to carry on and find out more.
I'll bank one bit of news for later this week it's no less important, in fact it's pretty exciting really but you'll have to wait!
So last week saw a lovely 2 days in London for Ian and I, we took a bit of time out for a wander around the Capital and saw Les Miserables which was AMAZING. We also stopped by to say Hi to everyone at The Lullaby Trust.
We returned home Thursday night and I found myself with a lovely day off work on Friday to catch up and that's when the postie delivered an unexpected letter.
A few years ago we were asked to give our permission for Alexander's slides and samples to be used in a research study funded by The Lullaby Trust into 'The prevalence of Long QT gene variants in SIDS'.
Although I have thought about the research we hadn't heard anything and I suppose we forgot about it assuming that if there was something to tell they would be in touch. What I hadn't realised is the time it takes to conduct such a study from gaining the families permission to collating results to contacting the families with any results, it's not a quick fix and certainly takes years to collate all the findings.
I didn't know that the study was near to any results so when we received a letter from Sheffield Teaching Hospital, where the study was conducted, it came completely out of the blue and knocked me for six.
The letter told us that the study revealed that Alexander did have the variant in his DNA and that this could be the reason for his death. I can't tell you how massive this news us for us. For 8 long years we've lived with not knowing and now we could have an answer. I cried all day, I was a mess, I can't quite believe that after all this time we might know what killed our precious little boy.
This just goes to show how important a role research plays for families like ours, that eventually there may be an answer, all we need is for someone to take the opportunity and go that extra mile.
The next step for us is found out more about Long QT and why Alexander has the variant. It could be that the changes just occurred in Alexander for the first time or the changes could be present in either Ian or me or both.
This could then extend to my other boys, if we know what it is we can take steps to prevent it happening again, if it's just a one off then we learn to grieve over again.
Long QT is very rare occurring in 1 person in every 2000 to read more here is a link to the NHS website NHS -LONG QT
I think I'm still in shock and know we are only at the beginning of our newest journey, as we move forward I hope to blog about it and the results.
Who knows why Alexander reacted the way he did to Long QT and why we had no indication anything was wrong but going forward this maybe something that Professor Neil Sebire can answer after his research project. He is looking for the XFactor in all these children, why when combined with other factors do they react so severely and leave all their families reeling. That's just a short explanation of what he's trying to achieve but believe me it's much more complicated than that!
Thank You all for being on this journey with us for 8 years, for all the money donated and raised for us over this time. This isn't going to stop, there are so many families who may never know unless we keep ploughing away. We are the lucky ones now we need to carry on and find out more.
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