Thursday, November 6, 2014

A long due update...

               It is been a long time I have updated the blog. So many things happened within this time and got really really busy. Also I spends lot of time talking with other EB parents at the EB forum "Epidermolysis Bullosa Lounge" on Facebook. If you or someone you know have EB and don't know about this forum, please join there. It is very helpful. So many people going through same situation. There will be always someone to answer your questions.

From our side quite a lot of things to update. Anna got her trach in January 2013. It was a very hard adjustment for us to get used with the trach. But now we are fine. She is doing good with the trach. Except, she don't like it getting changed every 3 weeks. She is very anxious about it. We have to fight with her to do it. Another drawback of trach is she gets sick very often. Someone just has to pass by coughing, she will get it. Before trach she never got any cold. This year itself she ended up in hospital 2 times with pneumonia. Both times had to spend 2 times in hospital. But she is a trooper. She keeps fighting every day. And the plus point of getting trach is she is finally on the growth chart.

She is gaining weight and height fine now. Another amazing thing happened is she has a little sister now. I will call her baby 'L' here. she is 1 year old. Anna is not that happy with her sister. When she was baby Anna used to like her a lot, since she can't hurt her or take her stuff. Now, baby L is all into Anna's stuff. She don't like we spending much time with Anna. She starts crying then :)

Another thing that is happening in the EB world is, everyone is now in a hope of finding a cure for EB. We are so hopeful now that a cure is very close. Dr.Tolar at University of Minnesota is very close to find a cure. He uses gene editing to correct the incorrect gene mutation which causes EB and puts those corrected cells back to the patient. He is waiting for FDA approval to start clinical trial on human. Also he needs lot of funding for that. There is very minimal government funding available for his research.

Several EB organizations are working very hard towards this research. There is an organization called EB Research Partnership(EBRP)(www.ebresearch.org) which is on a mission to raise 5M dollars this year for Dr.Tolar's research. This organization is founded by parents of EB kids. Several parents are doing stuff like this to raise EB awareness and funding for a cure. So we wanted to contribute towards it too. So I started a fundraiser on Anna's name on Crowdrise called 'Cure EB for Anna" https://www.crowdrise.com/annacureeb/. All the proceeds go to EBRP. Can you all please support us to raise money so that we can find a cure for EB for Anna and all other kids who suffers from this horrifying condition.

When Anna born there was very minimal research going on. But now things are looking very hopeful. I am so sure that within few years there will be a cure. Let us all work together for a cure!! also please keep praying for this to be true!!

Thank you
ss