Brandon and Katies run for reason was a amazing sucess

 As many of you know  that My grand daughter Katie was 12 mos 20 days when her death was ruled she died  of SUDC. Katie was living with us at the time she died while being in daycare.
Yesterday we had our first annual Brandon and Katies run for reason

Sudden Unexplained Death in Childhood (SUDC)

SUDC is the sudden and unexpected death of a child over the age of twelve months, which remains unexplained after a thorough case investigation is conducted. This must include: examination of the death scene, performance of a complete autopsy, and a review of the child and family’s medical history. SUDC is a diagnosis of exclusion - given when all known and possible causes of death have been ruled out.

The SUDC Program was created in September 2001 as part of the CJ Foundation for SIDS. It has been developed to provide a centralized resource for information, support and advocacy. It serves families and professionals affected by the tragedy of SUDC, and promotes awareness of SUDC in communities.

We were so over come with the community for their  love and support they showed for our families.
We have a rough total and we were able to raise almost 20k for research for a cause of SUDC

Sids is known but so little is known about SUDC. Our hope and dreams would bring awarness to communties and yesterday we achieved that goal.
Please visit our web site www.brandonandkatiesrun.org
Ty everyone from Oh for your love and support
Lisa

We hoped to bring awareness to community and educate people this is something that does not just happen in infancy but it also happens all the way up into adulthood,Thanks jodi for your sweet kind words
Lisa

I was reading over your post and My daughter died 6 times from the time she was 1 yr old till the time she was 3 yrs old... I wanted answers and I got them .... They diganosed her as having a heart condition called Long Q.T. Syndrome It's where the heart is long between the Q and T in the beat and if startled, tired, or anything happens during this time it causes the heart to begin to flutter and the blood stops flowing thus stopping the heart I had to get her back each time .. I am not sure if this is what happened with your Katie but if you have any imediate family mom, dad, brothers, sisters of Katie they need to be tested to find out if they may have Long Q.T. this heart condition is very often associated with SIDS so it's worth a shot to see before something happens to someone else in the family...

Good luck with your journey and I feel for you ... I almost lost my baby 6 different times before they put her pacemaker in I don't know what I would have done if I would have lost her... Sorry for your loss and may God bless You Always, Gloria

So much of the research is focusing on long qt but what is happening alot of chikdrens autopsy are not looking over qt and info is lost, They hope to educate how autopsy are done to rule out Qt but so much vital info is lost as they are not looking at that. I bet it can be so scarry to almost lost your daughter 6 times. We had a  adult friend die last year to  long qt and they ruled it sudden unexplained death in adult hood  she was only 32 years old and left 5 children  behind. No warning . Our children have gone threw extensive tests but I am wondering how do they diagnosis long qt ? Thanks for writing
Lisa

Well they can do it by going in and doing a heart cath which is to speed up the heart rate and see if the QT inervals are long or short and they can also do genetics testing about 70% of the people that have Long Q T show up in the genetics test unfortunally my daughter is NOT one of that 70% but since she has had the pacemaker she has not had any episodes of cardiac arrest (THANK GOD) so her doctor is confident that he has done the right diganosis i wish you luck in your journey to find answers ... I hope I have helped some.
BTW the doctors around here kept telling me that she was having epileptic (msp) episodes and that she would probally grow out of them... But after seeing a pediatric nurologist they told me it wasn't her brain and that until the heart was ruled out they wouldn't see her anymore so that is when we went to birmingham to a pediatric Cardiologist (Dr. LAU wonderful doc) when she was 3 years old we finally got some answers but for 2 years we were begging for answers and noone had them so I know how scary it is to not know what is happening or has happened to your baby.
May God Bless, Gloria

Edited to say ... they can also do a stress test on the person and look at the QT interviles but that is hard to do on a small child ... my 12 yr old had it done and he had to stop before his heart got to the proper speed so I wouldn't suggest that type of test for a small child but each doctor is different so I wish you the best.

Lisa
I don't know if I told you but my neice kiara died at my house 2 day after easter 5 years ago she just tuned 10 months that day, They ruled it as sudc instead of sids . My cousin thought it was his fault (she had scooted onto a pillow face down) and thought it was suffacation but they ruled that out because of the way her organs shut down. She had rsv but they said that was not the cause either. that was a terrible day for us I gave her cpr till the ambulance but to no avail. a few months later they told us that it was sudc I guess they just couldn't figure out what happened . I am glad the walk was such a success. You truly inspire me in so many wonderful ways!
dee

Has your cousin been in contact with  the sudc program www.sudc.org as far as my daughter knows  the name sudc is given to children who have died over 1 years old to an unknown cause after a thourough autopsy and investigation and Sids is given to children who die under 12 mos. My granddaughter was 1 year and 20 days old when she past away to this sudden unexplained death, the Sudc has a research program and a email support group for families affected by SUDC also we do a memory board at brandon and katies run and would love to add your neices name to the memory board.We were so scoked how many people came out and told us finally Sids or Sudc is being brought out in the open . Ijust recently found out that my dad's oldest sister  died of sids. My heart goes out to you and your family .
Hugs dee
Lisa