Yesterday was the fundraiser walk for the National Angelman Syndrome Foundation. I have two year old twin nephews with Angelman Syndrome. This syndrome is caused by the absence of certain genes on a certain chromosome. One in 15,000 children end up having it. For Clint and Cole, it means they will likely never speak more than a few words, they have seizures really often, they have difficulty eating and swallowing, and will seem floppy and jerky in their movements. They are learning to walk, although some children do not. They love water. And.....it is often called the Puppet Syndrome because they are so happy and laughing and smiling all the time.
As a service gift to my brother Nate and his family, I got involved in the Angelman Syndrome walk for this year. Noami and Rachel helped me too. We had a bubble blowing station for the kids, a professional face-painter, and lots of door prizes to give away. I arranged for our team to be called "Cruisin' with Clint and Cole". Our team raised $1,000.00 for the foundation. Christy surprised us all and had blue bracelet bands made for everyone on our team. You can see in the pictures that we are all wearing the blue bands. I didn't get a good close-up picture, but they say "Cruisin' with Clint and Cole" and they have two little angels on the bands. So cute!! We had a really big group from both sides of Nate and Christy's family there to participate in the walk. It was really amazing for us all to participate in something like this together.
The absolute highlight of the day was at the "finish line" of the walk. Clint and Cole rode in the baby jogger for the walk. Then when we were at the end, Nate ran and got their walkers from the van. We all moved to the sides of the path and cheered for Clint and Cole as Nate and Christy helped them walk to the finish line. It was the sweetest thing and many of us got teary-eyed. Just one tiny moment in time for these amazing parents and these sweet little guys to be verbally and symbolically cheered on for their accomplishments so far, and for the long road they have already been on to get to this point of starting to walk.
Click on these pictures of the boys walking to the finish line. They are so precious, you need to see them up close. So, so sweet. Breakin' down the blue streamer finish!!!!
It is extremely rare for twins to have this diagnosis. So Clint and Cole got a lot of attention. As they should....because they are so darn cute, and because Nate and Christy have a challenge larger than most do in this life. The other parents of "angels" especially take off their hats to Nate and Christy.
So many fun family members were there to hang out for the day. Here are a few of Clint and Cole's cousins having fun and being more than happy to support these little guys. Logan, Ada and Addison, sister Shay, Courtney and Nora.
Cousin Malauri and big brother, Wyatt running for a stretch of the walk. Aunt Amy and cousin Makayla, with a whole group of the family behind them, and uncle Ammon who just loves those boys.
After the walk festivities, we ordered pizza and had a picnic. Some of the "sistas" at the after-walk picnic. Amy, amazing angel-mommy Christy, me, Rachel, and Naomi.
I do believe there are angles who watch over us from the other side. But in our family we know that there are also angles living right here on earth among us. In the words of Alabama, "I believe there are angels among us. Sent down to us from somewhere up above. They come to you and me in our darkest hour. To show us how to give. To teach us how to live. To guide us with the light of love."
2 comments:
Well written. I am glad we were able to participate. Thanks for helping with it. Christy and Nate really are great parents and I know that they were given this challenge because of their strengths. Ofcourse, we all can help too! It is a blessing to have such cute boys in our family.
I cried just reading it. I wish I could have been there, too. What a treasured memory for Nate and Christy.
Post a Comment