There are times when I have no one to turn to. I do not have another family going through what I am going through near me. I guess in a way that can be considered a good thing. I feel as if I have a whole other world that I can visit when I go online and "talk" to parents of children with Leukodystrophy. They just aren't tangible.
I turned to the Hunter's Hope foundation
a couple years ago when we were first given Hailey's diagnosis, but I didn't get invested in everything they have to offer for one reason or another. I finally decided that I need to emerge myself in this disease and find out if I am doing everything I should be doing. I enrolled Hailey online under their wall of fame
but when I did so the information posted incorrectly. I received a phone call from Kathleen from Hunter's Hope and we began to speak and I shared Hailey's blog and Facebook page and we talked as if we have talked before even though this was the first time. I felt very comfortable with her. When I signed Hailey into Hunter's Hope, we received a welcome package and in it were books and a stuffed bear. One of the books was titled, Without a Word, by Jill Kelly
Jill Kelly is married to Jim Kelly who used to be the quarterback for the Buffalo Bills. Their son Hunter was diagnosed with Krabbe Leukodystrophy at only a few months old. The book was Jill's journey in having to understand and deal with her son having this terrible terminal diagnosis. It's a great book! The feelings she goes through you go through as well. In the book Jill mentions starting the Hunter's Hope Foundation and also mentioned a Family Symposium to bring families affected by this disease together along with Doctors, scientists, and board members.
At another time that I spoke with Kathleen she had mentioned the family symposium and told me that she knows this will have a wonderful effect on our family if we were able to attend. The big road blocks standing in our way was the financial aspect and then the location. The symposium is in Buffalo. I don't think I could get any further East. But on a positive note, I would LOVE to take Hailey to Niagra Falls!
I debated with Josh. I really want to go. Can Hailey travel that much? What will it be like? Is this something that we can do? I went back and forth and back and forth and we decided that this is an opportunity to bring us as a family together with other families that know what I'm going through, that have either been through it, are going through it, or will go through it. We can't not take this opportunity! I know that our situation of where Hailey is with Leukodystrophy can be different then where the other families are, but the stages of Leukodystrophy's are different for all kids.
I worked with Hunter's Hope and with Kathleen and we were able to get everything taken care of so that we are going to be able to attend. Hunter's Hope has been amazing in providing us with this opportunity. I will not be able to thank them enough. Some of the kids that I read about online or on Facebook will be their and these kids are celebrities in themselves and I can't wait to meet and bond with them all.
Just when I thought that this couldn't get anymore thrilling I was told that Hunter's Hope would also like to have us have a family photo shoot!! I haven't had any professional photos done of Hailey since her diagnosis. The whole experience of getting family photos was amazing! We had an wonderful photographer from Photo Studio Vegas
and she gave us such a great gift! I loved every photo she captured of Hailey and then she wrote about her experience with us
and I loved her even more. She really saw more then a sick kid, she saw who Hailey truly is.
Hunter's Hope doesn't want to ever have to turn a family away, so through donations
they can keep having families affected by Leukodystrophy attend.
I am really excited about this trip! This is a good thing. I honestly can't wait to get back so that I can tell you all about it! We really want to thank Kathleen and Hunter's Hope for this great gift that we will truly cherish. It's going to be amazing!! THANK YOU!!!!