Eli and Evan GM1 Fund
Symptomatic treatment for some of the neurologic signs and symptoms is available, but does not significantly alter nor slow the disease. It is unlikely either boy will celebrate their 10th birthdays. The parents cannot go to bed thinking tomorrow will be a better day as in all degenerative diseases, each day is worse than the prior one. How does a parent know that when looking at their children think is this their last breakfast I fix for them, is this the last time I play with my children, etc? We try to understand that someday as we age we will bury our parents, yet we are never prepared. We are not designed to bury our children, however. It is an unspeakable grief as there are no words which could begin to possible describe it.
The family has investigated all major medical center and currents the University of Minnesota, a long way from Tucson, is at the forefront of this disease. They will have to return often and as we further information to questions please contact myself, Christine Menza, at know, it is a great financial burden that none of us are ever prepared for. Gas, lodging, meals, etc., can wipe one's account out in a blink of an eye. Brad and Marilee are always the first to help someone else and now we, as a community, need to step up to the plate and help this family. Their strong faith in God is what is carrying through them at this time.
We are begging for help for this family. We have set up a bank account called the Eli and Evan GM1 Fund where one can simply deposit monies that will 100% go directly to the family to use for helping these angelic children.
I know that everyone has financial problems however, can you find it in your hearts to hold a bake sale, a neighborhood garage sale, offer to help in some way, go without that one Starbucks coffee this week or whatever your pleasure is and they place that one or two dollars into this bank account. Travel expenses along will be tremendous. Since I own a dog sitting service I have offered free care at any time for their lab. My husband is hosting a charity golf tournament. Watch for upcoming details if you are a golfer. Please reach deep in your hearts to help this wonderful family and their terrible tragedy. If for some reason there is any monies left over after the children are with our great Lord remaining monies will go directly for research for this disease.
Our hearts are broken. They have done so much to help so many, it is now out time to help them. We are so indebted emotionally to those who can help. Even one dollar make a difference. For 247-1299 (I own Tucson Wag’n Tails) or my husband Wally at 991-8003, day or night. God bless all of you, and God's blessings to Brad, Marilee, Leah, Eli, and Evan,
Thank you again -
Christine and Walter Menza
Haley please go to the following facebook page and request access you will meet a lot of people going through similar trials and we can answer all your questions. https://www.facebook.com/groups/18359531488/
My 2 month old son has GM1 (infantile) he has 2 years to live... What are you guys doing for treatment? Or even case study? I need help!!! I need some kind of advice!
If you want to learn more or follow our experiences check out our blog (http://gm1gangliosidosis.blogspot.com/). Thanks for all your support.
To all friends and family, this loving couple and there boys need all the help we can give. Please read the below info and find it in your hearts to open up for them. GOD BLESS all of you