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Support the WonderFlora & CMT Foundation to help people living with Charcot-Marie-Tooth.
The primary goal of WonderFlora & CMT Foundation is to ensure Flora’s development.
Our other main objectives are:
- To learn about CMT and raise awareness of the diverse symptoms of CMT
- Exploring and translating information and scientific research available from international organisations
- Developing and maintaining contacts with national and foreign organisations
- Organising professional conferences
- To identify innovative development opportunities and tools to support improvement
- To identify professional recommendations for specific dietary and psychological wellbeing measures to improve health
- To identify fellow sufferers, learn about cases, build community
- Establishing partnerships with development centres and professionals
- Promoting social integration
- Exploring sporting opportunities
What is Charcot-Marie-Tooth disease?
Charcot-Marie-Tooth (CMT) is a disease of the peripheral nerves that control muscles that can cause progressive loss of function and sensation in the hands, arms, legs, and feet. CMT is a form of inherited peripheral neuropathy.
CMT is the most commonly inherited peripheral neuropathy. CMT can be passed on from one generation to the next. It can also occur as a new or spontaneous (de novo) mutation.
CMT is slowly progressive, causing loss of normal function and/or sensation in the lower legs/feet and hands/arms.
CMT affects 3 million people worldwide.
Founder
My little girl was born in 2013 with bilateral clubfoot. She could not stand up during her early development. After a long period of time looking for the reasons we finally got an answer in 2015 by a doctor in Debrecen. The diagnosis was a rare genetic disorder called Charcot-Marie-Tooth 2C. After Flora’s birth we have overcome many obstacles. We gained a lot of knowledge while searching for a diagnosis and found various development options as well. However, I have experienced that very few people know what Charcot-Marie-Tooth, or CMT, really is. For this reason I would like to raise awareness of this rare genetic disorder in Hungary! My objective is also to gather the latest development opportunities, learn about international research, build cross-border relationships so that the best treatments can reach us. My aim is to support families in a similar situation by involving local doctors and specialists, increasing knowledge and education about CMT. Most of all, I am motivated to provide Flora with all the best available developmental opportunities and tools she needs to walk independently and – once a cure will be discovered – bringing it to her as soon as possible.
WonderFlora’s story
Hello!
My name is Flora and I am just like other ten year old girls. Except that I have to use a wheelchair to get from one point to another. Why this happened and in what way does my life differ from other’s life? Read my story and you’ll find out!
My mom and dad decided to have a baby after the London 2012 Olympics. I didn’t keep them waiting for long and I arrived in the summer of 2013.
When I was born I did everything the same way as other babies, but my legs were different. Since both my feet were turned inwards (called clubfoot), the doctors put them in plaster several times. Later I also had an Achilles tendon lengthening operation. Since I was still little, fortunately I don’t remember all of this. I only know about it from my parents’ stories. Although the operation made me wearing a snowboard-like brace day and night for months, I still learned how to crawl and climb well. I also went baby swimming and to the therapies of Anna Dévény that helped a lot.
Only standing up and making my first steps were left in my growth process but I just could not do it. Therefore my mom and dad started searching the reasons for what was wrong. Finally, a doctor in the city of Debrecen diagnosed me with the disease called Charcot-Marie-Tooth 2C. And this is the genetic disease that prevents me from walking. You know, there are many types of CMT.
The type I was diagnosed with may also affect my diaphragm, but for the time being there is no problem with that. At the moment everything is working well and I am also practising some breathing techniques as a form of prevention. Okay, I have to admit that when I start to do some hiccups, I scare the hell out of my dad. Sometimes I scare my mom too, but she is more worried about me climbing up anywhere. Since my legs are weak, my two arms are very strong. Therefore I can climb up anywhere with their help and come down with confidence. However, mom sometimes gets still afraid of my dangerous moves.
Generally I have to be more careful because of the CMT, but fortunately other illnesses stay away from me. Although I’m not really sure if it’s truly down to luck or it’s thank to the honey-lemon-ginger vitamin bombs Mom gives me.
However, let’s get back to the weekdays now.
Shortly after the diagnosis I was given a three-wheeled motorbike which I loved. From that moment I went with this motorbike everywhere and I also used it at the famiy daycare in which my parents enrolled me when I was 2. It was called Morzsaovi and I loved it! The nurses were lovely and my friends and I had lots of fun.
Soon afterwards I went to the kindergarten. It is called the Movement Enhancement Kindergarten (MEXI) so there were lots of kids like me. At this place everyone had difficulty to walk, but we did many things anyway. We went to the zoo, museums, went on lots of excursions and the kindergarten teachers even took us to ice skating. What was also pretty cool is that the institution had several swimming pools. So guess what…I learned how to swim during these years and I even had my first competition where I had to swim 11 metres! Well, that was a real challenge!
It wasn’t just the swimming I learned to do at the kindergarten. I also learned how to use a wheelchair. I do have a fancy little vehicle! It has a beautiful purple color and I can do lots of tricks with it. Usually the kids love to push me around, but before they do it’s better if they ask me whether I’m ready for it. I love that I’m fast with my wheelchair, but sometimes my little “partner” can also cause me difficulties. I don’t really like cobblestones, pavements and stairs, but luckily I often get helped.
Let’s get back to my kindergarten. I loved going there so I also started my school years in that institute. However, after one year we decided to change to an inclusive school. Unfortunately, because of the Covid restrictions I couldn’t even get to say goodbye to my previous classmates. So I can’t wait to be able to go back for a visit!
With lots of great experiences and all the knowledge gained at MEXI I was ready for the next challenge so – as I already mentioned – I changed school in September 2020. Now I go to the Children’s House Alternative Primary and Secondary School which is an inclusive school. It’s truly a miracle place where children with disabilities and with special educational needs can learn together with able-bodied children. We talk a lot and everyone accepts the others the way they are.
Isn’t it cool that we can be so diverse?
We share lots of experiences and we don’t even have much homework yet. I am very happy about this, because I have lots of activities to do in the afternoons. In addition to the physiotherapy, development and swimming, I also have a new activity from 2020. I’m going to a robot-therapy which helps me using my legs as much as possible. WATCH THE VIDEO!
This machine teaches me how to walk and also how to maintain the correct posture in the meanwhile. It feels really good to walk with it and it strengthens my leg muscles a lot. Usually my mom takes me to the development sessions and sometimes I whine a bit about not wanting to go, but once I arrive I’m happy to launch myself into the exercises.
I quickly wander around the centre to greet everyone and then I start the „wonder”. First of all, I get the robotic legs attached to me and then a harness to suspend me. It allows to adjust whether my full weight is going to be on my feet or not during the excercise. Not having all my weight makes it easier for me to do the right movement. Once everything is set, the treadmill starts and I walk faster and faster to overtake the robot that is running across the screen and I also need to collect as many stars as possible. I walk in this position for nearly 1 hour and afterwards I also do a big workout session with my assistants. It has only been six months (2020) after I first met my „robot pal” LOKOMAT when developers and doctors told me I’m already better skilled than before. By the evening I always arrive home tired, but the next day I’m ready again to take on new challenges with renewed vigour.
When it happens that we have nothing to do, we hang out a lot with mom’s friends and their kids trying to make all kinds of fun stuff. Most recently for instance we copied the house-protection pranks from the famous movie Home Alone. Furthermore I also really love dress-up parties!
Besides all the hours spent with development sessions or friends, there is always someone I find time for…my puppy called Samson. He has been with us for over six years becasue I got him for my 6th birthday. Samson looks like a huge black ball of yarn. I love to play with him and I have also shared with him some of my secrets. In the last few years we have been training him a lot thanks to the NEO (Hungarian Helping Dog Association) and in the summer of 2023 we passed the personal assistance dog exam together. In what way can he help me? He can pick up and get to my hand small objects from the ground like coins, wallets, tissue papers, leashes, baskets or anything I accidentally drop.
I’ve had many experiences already: I’ve started wall climbing, doing acrobatic rock-and-roll and I’m studying to play the piano. I also like reading books, writing comics, drawing and working on some graphics on my laptop. Regularly, one of my classmates and I make a DIY (do it yourself) school magazine. So, as you can see I live a happy life overall, but sometimes I do think how nice it would be if I could run like everyone else.
I currently need a very serious foot reconstruction surgery to get my feet down to the ground (one of the major symptoms of CMT is the deformity of feet and/or hands), and thereby be able to walk more stable. I would be able to do even more things in life after this surgery. The good news is that we have found the best orthopaedic surgeon regarding CMT! Since this surgeon and his complex reconstruction surgery is only available in the USA.
Please help my dreams come true as much as you can. Thank you!
WonderFlora & CMT Foundation
Account number: 11742300 – 21449149 – 00000000
SWIFT: OTPVHUHB IBAN: HU40 1174 2300 2144 9149 0000 0000
Notice: Flora Donation
Thank you very much for all your donations and for all the messages of encouragement!
Doctors abroad are already brainstorming about a definitive therapeutic solution for CMT patients, but genetic researches require lots of money and take a long time. I believe that one day a miracolous cure will arrive, but it’s hard to sit and just wait for it! Until then the above mentioned surgery is the most important step in my progress. It determines my future so that I can stay active as long as possible.
The Foundation was set up by my mom to help achieve my goals and to help others that were diagnosed with Charcot-Marie-Tooth. If you want to help, all you have to do is spread the word and support us! More people get to know us, the easier our journey will be to reach our goals. We have a lot of work to do and we are going to do our best in every aspect of it. We also take the time to change the way people think and spread the acceptance of people with disabilities. One of our major goals is to build a barrier-free future!
Until then, there’s a lot more to come! You can stay with me and get an insight of the special moments in my wonderworld by following us on Facebook or Instagram.
If you’d like a special designed „WONDERFLORA” t-shirt, bag, water bottle, towel or swimsuit featuring me as WonderFlora, scroll down and visit the Diapolo webshop. Every penny you spend on WonderFlora designed pieces will help the foundation and myself to reach our goals.
If you would like to financially support my development, you can do it through our Foundation by adding „Flora donation” to the message line. In addition, at the headline of our website you can also click on the „Donate” button and donate by using a credit card through the Simple Pay system.
