Good Wednesday morning everyone, or as they say " Happy Hump Day", lol.
'm writing in purple as Monday was National Rare Disease and since my son has a rare disease it means that extra something to me other than purple is my favourite color, lol
I haven't really gotten much accomplished lately, I can't get out since the tire in my van has a flat and a leak in the sidewall so I get to stay home... I guess that means I stay out of trouble :D I'm just trying to stay warm, where the heck is Spring?? It's freezing here with the wind!
I have been feeling a little down lately. As some of you know, my son Rhys has MPS1, Hurlers Syndrome, a rare genetic disease with no cure, on treatment by either a bone marrow/ stem cell transplant or enzyme replacement. We are lucky that he is doing well, but over the past 3 days, friends of ours who have children with MPS3 Sanfillipo have lost their precious children. 3 beautiful girls ages 12 to 14, 3 wonderful families who are heartbroken and dealing with the knowledge that they will no longer see their children grow up. The only upside to this is that these beautiful angels will no longer have to feel pain or suffer from this devastating disease. And to top it off, there is no cure or treatment for Sanfillipo :( I cannot even begin to imagine what these families are going through. So reality has smacked me in the face again because I know that someday it's going to me my son. As much as we try to stay hopeful and have faith and try to push the fear to the farthest part of our mind, when you see that precious children are dying from a similiar disease, it brings those feelings of fear back up. We are coming up on the 9 th anniversary Rhys's bone marrow transplant on March 27th. We have been through many hard times, setbacks, emotional roller coasters etc., but we still have him healthy here with us. But it doesn't take much, a blink of an eye for that to all change. So I ask that you keep these families in your prayers as they go through this painful and saddening time and make sure you give your children and grandchildren some extra hugs!
In memory of ^^Steffanie^^,^^Sarah^^ and ^^Jasmin^^, fly high sweet girls, fly high.
Well, now that I've gotten teary eyed again,
up there on my sidebar is a link to an awesome giveaway, I mean a huge giveaway consisting of many thing from very talented people so go on over to follow them and enter to win!!
I'm off to putter around here, I've some little things I want to paint and I'm still trying to figure out how to thread the sewing machine that my mom gave me... I did not get my sewing skills from my wonderful mom, I don't think I will ever be as good a sewer as her, she's 79 and still makes doll clothes from my daughter, yep, those little itty bitty Barbie clothes, and water babies clothes, I just don't know how she does it and she's so fussy about it! maybe I'll eventually inherit those skills??
Thanks for stopping by and I hope you are all having a great week!
Blessings and hugs,
The dusky blue coo coo bird
2 days ago