Too Much Similarity

I just got an email from the doc doing the study at St. Chris for the testing of Mito through mouth swabs. He did all the boys this time around(George has never been done due to his age, and he had passed by the time we did this last round) Richard has come back without any issues yet again! With him having a different father this is of huge note to them and brings much curiocity in terms of research reguarding genetics. Joshua has come in yet again boarderline deficient in Complex I. Michael is still severe in both Complex I an IV per this test.

We have found out some recent information about Hugh's family line. His great grandmother also lost a child at a very young age to SIDS. This was his mother's grandmother! His brother(Hugh shares the same maternal line with his brother) and niece have had seizure(Joshua's first symptom was a seizure) issues throughout their lives. There is quite a bit of coincidence. I told this to the doc running the study and it is certainly intriguing to say the very least.

I also knew that Josh and George were similar in age when they both had their problems. Today curiosity got the better of me and I just decided to count the days. They were both 143 days old! Both of them had their issues at almost the same time too in terms of age broken down to the hour. With George we don't know the exact time of death or when his problem really started but we do know it was after 2AM. Hugh and I were just floored when we actually realized this. It of course will not change anything and we know that but there is way to much similarity for it to be written off, even the doc agreed with me on that. We now don't doubt(we suspected this after a conversation with the medical examiner) that a seizure could have been the very thing that caused George's death.

I remember holding George and the way his body felt and the way he looked it was similar to the way it was with Joshua. It was very much the same except Joshua was seizing after Hugh picked him up off of the couch. He could not remeber if Josh was breathing or not at the time Hugh went to pick Josh up.(questions asked to us by the medical examiner and SIDS group)We knew George was not but that he was still warm(the whole reason the EMTS took him to the hospital). Joshua's brain to this day shows no signs of seizures dispite the fact he had two grand mals in 24 hours and both were long in duration. We know the likelihood of them fining anything with George would probably be the same as it is with Joshua...slim to none!

It seems as if each day we keep finding out new things and there is just way too much similarity. This of course will not change anything. It is wierd how without looking for things they keep falling into our laps. With that being said, it surely causes lots of curiosity on many fronts and not just for us, docs too, to see if there is a connection to it all. I don't spend much time hunting for answers or info but find that it keeps finding me for whatever reason. The doc at St Chris of course had more questions after the results of these tests and the new family info.

Josh has been on different meds and diet them Michael. Right before the new testing we restarted Josh back on his vitamins. We found much better tasting ones and have been giving him them one at a time rather then having them compounded so we could see what worked for him and what didn't. He also has a better diet then Michael because he does not have as much tummy trouble or sensory issues when it comes to food. We also switched the boys to as much organic things as we possibly can. I've been shopping at Whole Foods and Costco to get as much of their diet switched to this since chemicals used on our foods cause a lot of issues with free radicals that can cause more dysfunction. Unfortunately, Michael still refuses a lot in the way of food. Josh's diet changed a lot when he was put on periactin in order to avoid feeding tube placement and migraines.

I don't know if anything is related but boy there is a lot of similarities with the kids. This has of course caused a stir in those studying our case. It just proves that there is so much not known about this disease and the need for research and awareness among the medical community. Even if nothing comes of the study and they can't move forward, it is not a step back. Everything that is done is a step forward because even if it is a failure, we know it doesn't work and that is as important as knowing what does. Without research and those willing to participate, there would be cures for nothing and that is how we look at it when we volunteer to participate in these studies. If they are not huge risk factors for the boys then it will be worth the baby steps they are making to treatment and a possible cure some day. We know it may never come in our lifetime or even that of our children but we know someday it will make a difference for those yet born that will have this disease.

On another note, Hugh and I have decided we want to work on putting together a scholarship program in George's memory. There are a lot of logistics we want to work out but we want it to be kept locally since our community has been so instrumental in the support our family recieves. Yesterday Richard crossed over and we did the ceremony at the Middle School. Richard told me my brother's name was one one of the stones at the school for a sports thing he earned in school there. With that I thought of how even though I was a great student I never got an award and then it made me sad to think of how my kids will probably not be one of those kids to get an award due to many of the requirements. It them sent me to think of how many kids have disabilities that make school and other htings difficult and they are some of the most awsome kids you will ever know...things don't come easy to them but they keep trucking forward to be their own sort of "normal". With my kids not being severly affected but still having limitations due to their disease, I see a need for these kids to be recognized.

We want to work with our district to give a scholarship in his honor to a kid who has limitations but shows great efforts to overcome them. In a nut shell, that explains our boys and we just feel that is so important. George was the very example of a person who changed many lives in such a short amount of time and overcame his own set of odds put before him. In order to fund it we want to hold an awareness walk/family fun day in Septembers(Mito awarness here in our township and state and also George's birth month) to raise the money and also the awarness needed for the disease.

When our township 8th grade class graduates, we would like to present an 8th grader with a plaque and a small financial amount to help them strive forward in thier personal efforts in school and life. It is a way for us to give back to our community and also support out son's memory and another child who just needs a little recognition for their personal efforts in life that come harder to them then it does to most. This is of course in just the thought process but something promissing that we feel is within our reach and something we can continue to do without taking time from our time needed to spend with the children we still have here.

Thank you all for your prayers and support each and every day. We are still having good moments and bad but life is still going on. Tongith we are going to church for our Lent study program titled "On Earth as it is in Heaven" about death and life after...we are obviously intrigued by this and look forward to attending.