Sunday, June 5, 2016

2016 Hunter's Hope Family Symposium

The 2016 Hunter's Hope Family Symposium is right around the corner! At the end of July we will take Hailey to Buffalo so that we can spend time with other families who have been affected with Leukodystrophy. 

The time that we spend at the symposium is so incredibly precious to us. The very first time we attended I came back so refreshed and re-energied. I wrote about my experience HERE and I urge you to read through it. It's really the only way I can express how much we loved being a part of this extended family we have found. 

It's difficult to explain the feeling of inclusion, a place where there is no judgment when you have questions that you are afraid to ask, or feelings you aren't comfortable sharing with friends and immediate family. At the symposium these families KNOW what everyone is going through, what you have been through, and what you will go through. 

Last year I was in a panic because I was on a plane with my family and I noticed that I forgot Hailey's adapter for her g-tube, a necessary part of how we give her food and medication. I was going to be 4,000 miles away from a very important piece of medical equipment. I didn't want to post on my personal Facebook page because I worried about people thinking, "wow, she's a terrible mom forgetting something so important that her child needs!" So I asked my Leukodystrophy family if anyone had an extra adapter I could have and I got TONS of replies telling me they could help, and to not feel bad. If I was going anywhere else I'd be in big trouble, but going to the symposium I was covered and not judged. I was still embarrassed, but I was so happy it all worked out. 

Going to they symposium is something I feel we need to do. We need to be there, but it is so incredible expensive. The average cost for a family of 4 is $5,000. 

For families in attendance, meals and accommodations are paid for by Hunter's Hope. Travel arrangements to and from the event are the responsibility of the family but travel assistance is available for qualified families unable to cover these expenses. Donations made to Hunter's Hope help with these costs along with people who are willing to sponsor families. Any amount is welcome and appreciated.

I wanted to post a few photos from past symposiums that we have attended. These families and these children are so loved. Some children that were there the year before aren't there the next. Leukodystrophy takes the lives of these children, but we remember the times we held them, and kissed on them, and loved on them. 

I had said before that Hailey does not see disease or disability in any of these children. She goes up and talks to them, hugs on them, holds their hand, rubs their cheeks, she LOVES all these amazing children and their families. One thing I did notice is that Hailey also changes her voice to be softer and more gentle when she speaks to them. It's adorable! 

Hailey loves to mingle and she is such a social butterfly. She introduces herself to every single person and sometimes even joins them for meals instead of sitting with mom and dad. She has always been welcomed and I have never felt as if she was in the way. She gets to attend Kids Camp while mom and dad are at the symposium part and she LOVES it. They have activities planned for all the kids and if she needs help there is always someone by her side.

There are many ways you can help us attend the 2016 family symposium. We have set up a Team Hugs for Hailey page for the Every Step walk we will participate in while at the symposium. You can click this LINK to be taken to our page! ANY amount is appreciated, and you will know and see what your donation did for us. Our goal is at least $2,000 and I HOPE we can meet that goal.

We are counting down the days until we see our Leukodystrophy family again and Hailey is ready to give out some hugs!