Patient of the Month- Kirra S.
If you would like to make a donation to Soft Bones in honor of Kirra, please click the button below!
Kirra was diagnosed with HPP in April of 2022, after 15+ fractures. When she broke her hand in two places after being hit with a foam ball at recess, her mom demanded more testing. Her primary care physician (PCP) listened to all of her and her mom’s concerns and sent her straight in for a DEXA scan, and to see a geneticist. Kirra’s bone density was lower than it should have been, and the blood tests the geneticist ran showed an elevated B6 and low ALP. After having a genetic test, her ALPL gene showed HPP. She also has some markers for osteogenesis imperfecta (OI). Her family was lucky because they found doctors who were on top of getting her diagnosed and getting her on treatment very quickly! She was approved for Strensiq for 3 years by their insurance company and has been receiving treatment since May 2022.
Kirra has had a bumpy 2024. She broke her foot in three places in January, broke a rib in February, broke her left wrist twice in May, and broke her right wrist in July. She has almost spent more time in a cast and/or brace this calendar year than she has been out of one! Her doctor made an emergency appointment to address her recent fractures and changed her medication dosage. Her family hopes it will stop her from breaking any more bones this year!
Kirra is great at adjusting to fractures, (which isn’t the best thing to be great at, but it’s better than not coping with them!) and has been writing in school without the use of her right thumb! She takes everything in stride and smiles through it. She is excited to be a peer tutor this school year, helping other kids with special needs to be successful in their classes!
Kirra likes to focus on other kids who are struggling, instead of thinking only of herself. She and her family are in the process of creating an official non-profit called Kirra Kares, where she collects stuffed animals and distributes them to children in doctor’s offices, schools, and anyone else in need. Kirra has been doing this every year. She works with a local women’s motorcycle club to do a Teddy Bear Ride to collect stuffed animals. Currently, she has collected over 300 stuffed animals. She has personally handed out over 150 stuffed animals to other kids.
One of the ways Kirra faces her struggles every day is through writing. She has written several poems expressing her frustrations, pains, and hopes for the future with HPP. She showcased some of her writing in various competitions and won one at Utah State University.
This is one of her favorite poems, it is called “Broken”.
Broken by Kirra S.
Two years ago, I was diagnosed.
I was falling apart.
Broken.
My smile masked my tear-stained cheeks
So no one saw.
My arms were empty, longing for love.
And no. one. knew.
No one knew how to be there.
No one knew I was broken.
No one knew I felt beyond repair.
My arm, my leg, immovable in a cast.
Broken.
My heart surrounded by plaster.
Colored and signed, graffiti trying to sink in.
Words and treatments, nothing made a difference.
Until. You.
You saw me.
Broken.
You brought a chisel.
We shattered that cast.
You made it through.
My wall was broken.
I broke again too.
You were there.
Picking up pieces of me.
Gluing and taping.
Forging and bonding.
Fixing the broken.
You were there.
No one else knew how to be there, but you.
No one else knew I was broken, but you.
No one else knew I felt beyond repair, but you.
You were there.
You pieced me back together.
My mask fell off.
And you were just as broken.
Why?
You made an effort.
Why?
You loved me?
Why?
You were there.
And I’m NOT BROKEN!
Kirra is a great example of how to face challenges without giving up, even when things are really hard. She goes to school every day, even if it is in her wheelchair some days, and smiles and makes sure those around her feel loved and seen. Kirra is going to do great things with her life and wants to be a rheumatologist when she grows up, so she can help kids just like her.
Soft Bones has helped Kirra when she has felt lost and alone. She has received fun projects as a member of the Hippo Squad, has attended the National Patient Meeting to meet kids like her, and helped others learn more about this disease. Kirra’s family is grateful for the Soft Bones community, and are excited to continue their journey with them!
Responses