Maddie's Life with Pfeiffer Syndrome
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- Опубликовано: 25 авг 2023
- Maddie Blitvich is a bright, and lively seven-year-old who lives with Pfeiffer Syndrome 2, a rare genetic condition. The condition severely impacts the shape of Maddie’s head, and she’s undergone many surgeries on her skull. Pfeiffer Syndrome 2 also means she has speech and hearing issues. Her mother Rachael is a solo parent, totally dedicated to her daughter, trying her best to give Maddie as normal a childhood as possible. Maddie has recently started at a very supportive school. While she struggles with her physical limitations due to difficulties with her balance, she loves to play like any other kid. Maddie is desperate to try out riding a bike. Her fragile skull means she can’t risk riding without proper head protection. However, Rachael’s been unable to find a bike helmet on the market that fits Maddie’s unusually shaped head. Now a design lab at Auckland University has offered to help. The lab will try making a custom helmet for Maddie using sophisticated 3D mapping and printing technology. Could this be the solution to get Maddie out wheeling?
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Made with funding from NZ on Air 
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Maddie is so sweet. That engineering kid was super sweet to her too. I hope he goes into something working with kids.
"zebra eats pizza" so adorable :)
Her helmet is fabulous, all the other kids are going to want one too!
What a beautiful soul
Let's go sister, you make me proud to be your big brother. Thank you for teaching me how to see life from your perspective. See you in a few months x
Give her a *huge* hug from us here in this comment section - we think she's fantastic! ❤️🤗
Love for Maddie!!
What a beautiful little girl and a wonderful momma ❤❤
Maddie is so lovable and she has a wonderful mom. I hope they just have the happy ever after.
Amen to that. ❤
I went to elementary school with a girl who I think had Pfeiffer Syndrome… I always felt so bad for her because nobody ever talked to her or played with her… I used to sit next to her on the bus. I’ve thought about her many times over the years wondering how she is… that was back in 1980.
Rock on. Keep moving forward!
Maddie is beautiful girl and she has amazing mum❤️❤️❤️
Maddy is so sweet and very much independent. Living her best life ❤
This Amazing Mother and her Precious Daughter were made for each other. 💘
GOD BLESS YOU . Maddie.
I can't imagine the pain in her healing from all of those surgeries. What a remarkable angel you have in Maddie. God Bless you mom. You and your beautiful daughter are an inspiration.
I think all kids want to learn, it’s natural. I am glad she has such a great mom.
Thanks for sharing this lovely story. Maddy has a strong sense of pushing herself as far as she can, and enjoying the struggle. Much respect to Maddy and her Mom.
Wish you well. Keep moving forward.
Thank you! Maddie is definitely beautiful and special! And she’s so smart - guten Morgen Maddie! Maddie - you have the coolest and most beautiful helmet I‘ve ever seen! And just look at you go on that bike! Go get them girl!
What a beautiful little girl, her smile is everything. I wish you an amazing life, Maddie. The world is waiting for you. ❤
Amazing mother and daughter!
Beautiful story, thanks for sharing 👍👍
What a perfect helmet!!! How exciting. There are so many things she can participate in now that she has one. ❤️
This episode really warmed my heart! Maddie’s story is incredibly inspiring. 💖✨ It was so uplifting watching her ride her bike with her cool helmet and outfit and inner confidence and seeing mom beaming with joy. Thank you so much for sharing this really special episode! 💖✨
Sweet Maddy
Awe I love Maddie she's so Happy and Adorable!!!😍😍😍😍😃😃😃😃😁😁 when she got her helmet and got on the special bike that just melted my heart💖💖💖💖She's a Delightful Happy girl
Maddie is a fun loving, positive, and amazing child. You’re amazing Maddie and Rachael!
She’s absolutely precious she’s a beautiful little girl ❤
Love this series. Thanks for sharing Maddie’s story.
What a beautiful little girl, I smiled all the while I was watching this video. Mom and Grandma you’re pretty awesome too. Keep going Maddie and keep trying out new things, you’re going to be great! Love from Canada.🥰👍🇨🇦
Bless her and her family
Madison is a precious girl thank you for sharing her story. You’re a fabulous mom, Rachel. The helmet Madison got so she can ride a bike safely looks just like a helmet anyone could wear which is marvelous! Maddison is normal and doing normal things in Maddie time. Rachel, riding horses is absolutely possible for your beautiful daughter as long as she doesn’t feel anxious. Equine therapy is fantastic and the people who run these programs are so passionate, supportive, patient and empathetic. They are very good at helping people become comfortable and progressing toward getting onto the horses and riding.
a lovely young lady with a fantastic mum! beautiful.
Wow thanks so much for sharing your story ❤ You
are both completely amazing 🤩 Maddie is just the coolest girl ever!!!
Thank you for sharing your wonderful story. Inspirational plus ..Many greetings to you all .Keep enjoying :)
Why does this melt my heart, made is beautiful ♥ 🤗🥰
I lost a childhood friend stacy from pfeiffer's syndrome she was amazing and I didnt know she passed until my staff looked it up
That helmet and bike are awesome
Wow, I was my cousin, and her daughter's daughter love from Patricia de Lange
Beautiful girl rock star❤
Did the teacher just greet her class in German?? (Guten Morgen?)
Zebras eat pizza , love it
😃👌
Pfeiffer Syndrome seems very similar to Down Syndrome.
There are a few overlaps, but still very different disorders.