Reed Update

REED UPDATE: 

I wanted to get back to why people belong to this page in the first place to hear about how Reed is doing and get updates on him.  Today we headed down for our six month check up with Dr. Perlman.  The appt went good and things seem to be holding steady at this point with Reed's health.  During our discussion with Dr. Perlman we talked a little about some stiffness in Reed's legs and we were all on the fence on if we should start Reed on Baclofin.  Up tell this point we haven't had to put Reed on any meds and we were wanting to keep it this way as long as possible. Dr. Perlman was also on the fence because Reed's stiffness seems pretty minimal and not affecting his ability to get around but he also thought it might help make a little bit of difference in some daily function.  It was decided to try a small dose to see if we notice any difference or not. We both have mixed feeling on this as we are not big meds people so this is a hard one for us, as like most medicine there are benefits and side effects and some of the side effects to us seem worry some but also those side effects are in very long term use as well, but still scary because you never know.  I also wanted to update on why the sudden urge to fund raise so much for research, there are a handful of VWM families around the world trying to raise 2.6 million dollars which is needed to help speed up the research process and hopefully start some human clinical trails. Since VWM is so rare the research doesn't have big money backing it so we all are doing what we can to contribute and save our kids. We recently found out that so far 2016 what has been raised for VWM research is just under what had been raised in the last three years combined! But we are still only 15% of the way to our goal. We are fighting hard for Reed as anyone would do for there son and the Team Reed family has blown us away with all the love and support for our boy, this little community has made a huge impact with a small voice and small reach through social media we couldn't be more blown away by you all!!! So I want to finish with some prayer requests, please pray for the meds situation and comfort for us, as I am feeling a little uneasy about it.  Pray for the research, for the researchers and for the fundraising.  It is a hard thing for us to continue to ask over and over again for your financial support but please know you are making a difference in what will be a treatment/cure for VWM, your contributions are making a huge impact and will make a difference in the lives affected by this disease.  So thank you for your support and your continued support!! 

https://www.crowdrise.com/findacureforvwm/fundraiser/erikamealhowhavlik