1st International MPEI Conference
Donation protected
I am raising money to go to meet my family. Many families that I have gotten to know from an online support group. These are people who have carried us through our darkest hours with our son Micah. We have all known eachother for over 8 years now and my Wish*Dream is to be able to see them face to face, to hug them and to meet their children and hold them. Since our kids have a rare disease called Migrating Partial Epilepsy in Infancy - they say that only 1 in a million people have it and they are born with it. Our children usually never make it to age 12, so for many of us now, (inlcluding me) this means that we have already lost our children to their illness. Micah passed away before his 4th birthday in April 2010. His life changed mine forever. I am still part of the online group that was started for kids like Micah and we all try to support eachother as much as we can. There is ongoing research in many different countries and new Medications being tried and used every day. There are still no real answers to this dabilatating disease that claims our chilren and breaks our hearts.
Getting there.... We live in Alaska so this means that I may be able to use Airline Miles. I am hoping to be able to stay a week so that I can do some visiting with some of our members that live in the area.
The plan is to Meet in the Uk in March 2015 if all goes well and have as many people from the surrounding area show up, as well as any others who can make it from around the world. We hope to rent space at a facility where families who still have children with MPEI can stay and hang out for a few days together!!! We are also planning on having some of the leading Dr's in this field there to share their findings with us. There is currently no cure for this disease and no current medication to help it. Although there have been some breakthroughs in identifying some of the genetic flaws, there has never been any foundational evidence, cause or reason for this disease that we know of yet.
Getting to meet my friends and meet other kids like my son is a dream of mine.
Will you Support Me? Will you send Me?
Thanks!!!
Getting there.... We live in Alaska so this means that I may be able to use Airline Miles. I am hoping to be able to stay a week so that I can do some visiting with some of our members that live in the area.
The plan is to Meet in the Uk in March 2015 if all goes well and have as many people from the surrounding area show up, as well as any others who can make it from around the world. We hope to rent space at a facility where families who still have children with MPEI can stay and hang out for a few days together!!! We are also planning on having some of the leading Dr's in this field there to share their findings with us. There is currently no cure for this disease and no current medication to help it. Although there have been some breakthroughs in identifying some of the genetic flaws, there has never been any foundational evidence, cause or reason for this disease that we know of yet.
Getting to meet my friends and meet other kids like my son is a dream of mine.
Will you Support Me? Will you send Me?
Thanks!!!
Organizer
Rachel Brittin
Organizer
Homer, AK
