This blog is about our journey with Arthrogryposis(AMC). It is not just a walk in the park. Flying all over the country for medical treatments for our two kids. Therapies and surgeries. Not always fun but always necessary.

Wednesday, April 10, 2013

For Sophie if you read this please go and look at the tshirts we are selling for sophie to raise enough money to take her to a conference for people with her condition. She really deserves to go. SHe has worked so hard and been through so much pain. She needs to be with people who understand that this isnt like your brothers friends cousins neighbors milk man who had a broken leg once. People who understand this is a lifelong issue and a lifelong battle. She needs to see people with her condition who have jobs, have children, and husbands and live the American dream. is also a fundraiser for the same conference. We have to have all reservations in by May 28 for July conference. I am a very giving person. I give everywhere I can. I help anyone who needs it. This time, not for me, but for my daughter, I am asking for help. So far we have had 3 donations and 2 commitments to buy shirts if we reach our goal. If we do not reach our goal no shirts will be printed. we do not even have enough for ONE plane ticket, much less hotel costs conference fees meals and a ticket for Me to take her.

Saturday, April 6, 2013

Fundraiser for Sophie

Sophie is doing a great job walking. We are trying to figure out the best walker for her to get her moving all the time. We have tried an otto bock and also a grillo. Otto bock is ok but Im not convinced its the best one for her and its huge. Grillo was very hard for her to work and she still had trouble standing straight. Meanwhile I am trying to raise enough money to take her to las vegas for a week to a conference there with a bunch of other people with the same condition she has. She needs to meet others with AMC, adults, kids, teens, all of them. She needs to see that her life can be like everyone elses. she can still grow up go to school get married have a family etc. she will just fine ways to do it her way. She really needs that encouragement. She often tells me she wont be able to have a baby some day, even though she really wants to be a mom someday. She doesnt think she will be able to because of her AMC. She needs to be where different is normal. where she can be Sophie for awhile instead of the girl in the wheelchair or the girl in the walker. She can be surrounded by other kids walking with walkers, using gait trainers, using walking sticks, using a wheelchair. She sees kids like that at shriners but that is a medical setting. She needs to see this in a social community setting. I am doing a tshirt fundraiser. if we do not reach out goal of 100 shirts reserved they will not print. Please go order one today! help our little peanut learn that she is just like everyone else. Its easy to say it but she really needs to FEEL it.