Hello my family & friends!
I can’t believe another year has passed- and with so much excitement! First- I turned six years old. I also started Kindergarten, moved into my new house and found out my mommy is having a baby! Really really cool stuff! And the best thing- I’m enjoying it all with my sister Skylar-Rose. She just means the world to me…
My daily routine to keep me healthy hasn’t changed much from last year. I still do my 45min vest workout to clear my lungs twice a day, take my sauce (pancreatic enzymes) with every single thing I eat, visit my many Doctors every few months and am extremely aware of the bad germs that can harm me.
It’s been a tough Fall & Winter with my health, but I haven’t allowed it to get me down or in my way of being a typical kid. Unfortunately tho, I did have to miss out on a lot of fun stuff like bday parties, traditional holiday events and other big things. I am beginning to realize my health isn’t always going to be the strongest when I want it to. It’s a hard thing to swallow for a six yr old but I’m starting to get it. After all, it is part of my life. I’m still fortunate that I do lots of other incredible stuff like our frequent trips to Miami, weekend sleepovers in NYC, playing with my cousins & friends when we are all healthy and going to bday parties when the timing is right! I am still very, very thankful…
As you know, my family is always trying to make a difference with CF. On May 23rd, my family & friends will once again be a big part of the CF Great Strides walk in downtown NYC. It’d be really cool if you can join us! My team, Stanley’s City Slickers, has been such a HUGE part of CF for me & my life. I know I’m healthier because of them!! Together, we’ve raised over $300,000k and have told thousands of people about CF through our NYC marketing campaign. It really is such a cool experience.
I must say, our involvement with CF has really helped me understand my disease better. It’s still hard for my sister though. She’s only 4. Sometimes I hear her say, “Mommy, I don’t want Big Bro to be sick anymore.” I have to tell her it’s ok and we hug.
You know what though? With all the love & support I have, this disease isn’t that bad after all…
Love and hugs always,