The RMH Hurler Families

Tonight we had another dinner at the Ronald McDonald House (RMH) prepared by very generous volunteers. There were 4 kids with Hurler Syndrome at dinner.

Of course Gracie was there. I think she was eating squash tonight. She is the youngest of the 4 kids, and she is scheduled to be admitted to the hospital on Tuesday for all of her pre-transplant prep. with transplat cheduled for cinco de mayo. Ole!

There was Chance, who is just over 1 year old, and is 38 days post transplant. He was running around in his little mask inside a little walker seat. It was kind of like a bumper car for babies. :) Chance is having a procedure tomorrow to replace his broken central line. His mom, Tracie, is also expecting a new baby any day now! Talk about stress! Please keep then in your prayers. Chance has a website too: http://www.caringbridge.org/visit/chancers

Next was Riley. Riley is the adorable little redhead who is having issues with her insurance. She's the comedian in the group. :) She and her parents have been fighting for a while and are still waiting to move forward with her transplant. We are pulling for them. Her website is: http://ryliehays.blogspot.com/

Finally, we met Wyatt. He's another adorable little redhead who is in Minneapolis for his one year post-transplant check up. Go Wyatt! He and his family live in Pensacola. He was running around everywhere just like a normal two year old. Seeing him and meeting his parents was really inspiring. Wyatt doesn't say a whole lot, but he understand everything you say, and he communicates really well through sign language. It was really cool to watch him communicate. Wyatt's website is: http://www.caringbridge.org/visit/wyatt

There are so many other families there... I've gotta say, the RMH is an amazing place. While I wish no one ever had to deal with such issues, being surrounded by families going through the same, or very similar ordeals is really supportive. It's a big support group. You can feel sad, angry, relieved, and scared and not have to explain why to the people who surround you. You can bitch and complain and be in great company, since everyone there has much to complain about. It's also interesting to hear the stories of other children from all over the country, and the ordeals they have experienced through initial diagnosis and treatment prior to arriving at RMH and U of MN. It's also encouraging to be in an environment so full of hope and faith (not the terrible sitcom).

I hope you are all doing well. Wish us all good luck this week!