Down the road from our house here in Thailand, there is a work site. At this site there are a few men, 2 women, and one child. They are poor, the poorest people I have ever seen. The women I think are my age, but look so much older. All of the adults have lost their teeth, even the front ones, and the little boy. Oh that little boy. He plays all day there at the construction site with no shoes and rags for clothes. I thought he was 3 or 4, but after we met him we found out he was 6 years old. The boys brought him toys and clothes, and we always bring him a snack when we walk by.
One of the women is his mom. Oh how much she loves him. She is usually sitting under an umbrella with him holding him, or giving him water from the community water bucket, and when we bring him presents she always gently brings him over to tell us thank you since he is very shy. He seems happy, he is very loved.
I found myself standing in the middle of the street the other day staring at his mom talking to him, and feeding him the grapes we had just gave him.
I realized as I stood there, that I was jealous.
I would trade it all. I would lose my teeth, my house, my youth. I would work in the sun all day, 7 days a week just to have my little boy to love.
I would trade it all, just to have Trek.
Tomorrow is National Rare Disease Day, the motto of the day is, Alone we are rare, together we are strong. I have a post I have been working on about Trek’s Niemann Pick Type A timeline to share tomorrow in honor of it.
Trek sadly is included in this rare group, having an extremely rare disease-Niemann Pick Type A. Our friend Shannon has a great post she made about Rare Disease Day, what it’s all about, and what you can do to support it at the link below.
A few things I can think of are-
::go to the blogs of the babies we know of that have Niemann Pick Type A, a very rare disease, and leave them a comment of love
currently living with NPA-
little NPA angels-
::If you know of a child with a rare disease or any disease at all, you can order them this beautiful children’s book by Shannon, Wylder’s mom, wrote especially for children living with sickness or disease, just click on the book below to be taken to Amazon.
::You can take part in Quinn’s Thailand Fundraiser to help Quinn do some of the fun things on her list for her little life.
::Wear Trek’s Embrace Life bracelet tomorrow, or any other rare disease bracelet that you have to help raise awareness that will eventually lead to cures for all rare diseases.
if you want your own Embrace Life bracelet, you can get it here.
Thank you for all of the sharing and supporting we have had for Quinn’s fundraiser so far, we have already sold over 50 anklets!
Have a beautiful day everyone, and to all of our rare disease friends-
I am so sorry we are in this group together, I never dreamed I would be, as I know you did not either want to be included. But I am so thankful for our friendships, and the love you have shared with me. So much love from us to you-xoxo, Chelsea