Wednesday, 14 May 2008

not good

we have recently discovered that our youngest son, Jack, has a heart condition called long QT syndrome which, especially when undiagnosed, can cause collapse and sudden death. I tried to blog about this the day we found out and it was the sort of piece you would expect from a parent who has just been told that their child could die at any moment. Luckily for you all the computer wouldn't let me publish the entry.
Having spoken to the consultant at length Jack has now been prescribed beta-blockers which will lessen the risk enormously. He will never be a pilot or an astronaut but he can get on with his life because the medication will stop him 'overdoing' things.

We are still very upset and frightened but Jack is leading the way in looking to the future, he is a star, everyone who meets him loves him and he has a great future.


Jo said...


My daughter, Ellice, was diagnosed with the same disorder at age 12. She is 19 now, healthy and taking her beta blocker every night on her own. I just found out a week ago that, through genetic testing, I have the same mutation but don't seem to have the syndrome as it has never shown up on an ekg. My other daughter who is 21 just had the blood test but the results are not yet available. So it is very scary but it seems that there is lots of research going on and more and more people/drs. are aware of this disorder so I'm hopeful that when treated, this syndrome can allow full and active lives for those who are diagnosed.

Best to you and your family.

JoAnn Russell
Washington, DC

Toadee said...

thank you JoAnn, with things like this it is so helpful to know you're not alone and it is great to hear how others cope


KB said...

Awww sweetie, he is such a brave, little boy. Give him a big love from me and hugs for you too.

Toadee said...

thank you dear friend, there is lots of hugging going on and yours are the best, talk soon xxx

JesseTheCat said...

All my support and strength to you at this time,dear Toadee..and also to your wife and son.I will be praying for a better solution of course,but still I am glad that he is receiving good treatment,that will go a long way to helping him live a full and happy life :)
Hugs to all over there

Toadee said...

thank you so much jesse