Scarlett's advice-Insight from a 7 yr old

Being a bleeder means you need to trust yourself

no matter what other people say.

Be aware of your surroundings

and what people say isn't always true.

You can have fun. . .

but be careful.

When you’re a bleeder don't think because you’re a bleeder

that means you’re not special. . .

you’re a rare type of person.

All bleeding disorders types are special

for who you are inside.

Just believe that what you are doing,

you can’t get hurt.

-Scarlett Peepe, Age 7, Platelet Storage Pool Disorder

Kari Peepe

©KariPeepe/atouchofscarlett.blogspot.com

http://atouchofscarlett.blogspot.com

pspdaware@gmail.com

www.pspdaware.com

For more of my blog entries about our life in elementary school check out:

College or Kinderten-Enrolling Scarlett in Elementary School: http://atouchofscarlett.blogspot.com/2013/10/the-kindergarten-nightmare.html

Scarlett's 504 plan-Kinder: http://atouchofscarlett.blogspot.com/2014/06/section-504-to-play-no-more.html

Scarlett's Kinder year comes to a close: http://atouchofscarlett.blogspot.com/2014/05/ode-to-teenager.html

Scarlett's first week of 1st grade: http://atouchofscarlett.blogspot.com/2014/07/scarletts-first-week-of-1st-grade.html

A trip to the ER and Scarlett's 1st CATscan -1st grade: http://atouchofscarlett.blogspot.com/2014/08/a-trip-to-er-and-scarletts-first-cat.html

A Family Camp for Bleeding Disorders gave Scarlett the confidence to speak up for what she wanted at school-1st grade: http://atouchofscarlett.blogspot.com/2015/10/a-piece-i-wrote-for-hfa-s-infusing-love_17.html

Advocating:
Scarlett's interview: http://atouchofscarlett.blogspot.com/2015/10/proudest-momma-on-blockmy-little.html

For more stories on my journey with defending our disorder and becoming our own advocates please check out:

The Jackass Whisperer, Dealing with other people's judgements: http://atouchofscarlett.blogspot.com/2014/07/the-jackass-whisperer.html

Help wanted!Seeking Dr who give a shit: http://atouchofscarlett.blogspot.com/2014/03/help-wanted-seeking-dr-who-gives-shit.html

Defending our Disorder: http://atouchofscarlett.blogspot.com/2014/02/defending-our-disorder.html

Interviews, Published pieces, etc: http://atouchofscarlett.blogspot.com/2015/02/my-voice-is-being-heard-interviews.html

Fear of the Unkown: http://atouchofscarlett.blogspot.com/2014/08/fear-of-unknown-my-1st-blog-for.html

Comments

PSPD 101- What is Platelet Storage Pool Disorder

Hello, My name is Kari Peepe and in 2011 my daughter and I were diagnosed with a platelet storage pool disorder. After several years of researching and going online to find men sharing their stories about hemophilia, but never women talking about platelet disorders. . . I decided to start my own personal blog, A touch of Scarlett. This has become a place where I share stories about our life with a rare bleeding disorder, spread awareness and hopefully empower others to help me in the fight for a better treatment plan. 1- What is PSPD? PSPD is as autosomal inherited disorder (like Cystic Fibrosis) PSPD is a rare autosomal inherited bleeding disorder. Unlike hemophilia which is an x linked recessive bleeding disorder. Platelet disorders fall into 2 categories Qualitative (abnormal function and/or structure of the platelet) vs. Quantitative (from having too few or too many).We fall under the qualitative category. Platelets are small parts of the blood cells that hel...

2020, you suck! Her introduction into womanhood wasn't supposed to look like this......

2020, what a year. It seems appropriate that Halloween weekend during the pandemic would end up being when my little girl become a woman. Friday October 30, 2020 It started at 12:35 pm on a Friday. Halloween was the next day and my son's school was having a safe-distance trick-or-treating event that we'd been anxiously awaiting to attend. This would be the first time either of my kids were getting invited to come onto one of their campus' since the school year started. So, we were dressed in our Halloween outfits and ready for a fun filled day. Keeping on her brave face as we rush out the door. We were rushing out the door, late as usual. Since the pandemic... we've definitely taken advantage of having a minimal schedule and being on time hasn't become our strong suit. Scarlett came running up to me whispering “ Mommy Mommy, when I wiped there was blood. ” I scurried her back to the bathroom to the assess the situation and assured her she’d be oK. " This was ...

Give Kids the World Village. . .Go to your happy place-Scarlet's Make-A-Wish PART 5

When people say . . . "To go to your happy place". . . I now have somewhere to go. My name is Kari Peepe and I am the lucky parent of Miss Scarlett Peepe. . . We just got back from Give Kids the World in Florida and we are literally beaming and my jaw hurts from smiling so much from watching my daughter in a state of such pure joy for one whole week. I want to cherish the feeling we had when we returned from Scarlett's Make-A-Wish trip . . .forever! Scarlett was diagnosed when she was 3 years old with Platelet Storage Pool Disorder- a rare bleeding disorder which has left her with a life time of blood work, medications, restrictions and fears of life threatening situations. As soon as Scarlett found out about Make-A-Wish, she was ecstatic but nothing could’ve prepared her or us for the experience that was about to take place and the joy it would leave in our hearts and our minds forever. Prior to meeting Scarlett's Make-A-Wish team I had ne...

A Touch of Scarlett, our journey with a rare bleeding disorder

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