Hi friends 🙂
Today I’d like to share with you a very special story of a very special little girl! I first heard of this story through Maria Polyzou and her team. And I thought to myself that this, is defineltaly something that the world needs to know about… So here we go!
World meet Marilena and her dad, Mr. Vassilis Gerogiannis.
Marilena (her name is a combination of two beautiful Greek names, Maria and Elena) was diagnosed with a very rare syndrome called “OKAMOTO” syndrome when she was two years old. She is one out of four diagnosed cases with Okamoto syndrome all over the world, and currently only two of those kids are alive. Marilena is an amazing fighter. Even though she has already undergone 10 operations in order for her to have a better quality of life and to be able to survive she is a very happy and full of life little girl who loves her dogs and always smiles. According to her mum, Marilena “is very funny and likes making others laugh. She has amazing strength and she loves to learn new things. She becomes very stubborn when she has to do something which she can’t”.
Today, Marilena is 12 years old and has run many races including the original Athens marathon with her dad (and sometimes her furry friend 🙂 ). Unfortunatelly, Marilena and her family are struggling because this syndrome is so rare and there is very little support from the government or the public health sector in Greece where they live. If you are interested to read Marilena’s full story please go here or here. Spreading awareness for this very rare syndrome can help more people that suffer form it to get diagnosed and can also help individuals who are already struggling with it and their families to get the proper support and treatments.
Marilena’s parents mrs. Anna Kyrozi Gerogianni and mr. Vassilis Gerogiannis are two extremely strong individuals. They love their daughter and care for her deeply, and trying their very best in order for Marilena to live a full life. Her dad, mr. Vassilis Gerogiannis has pushed Marilena’s stroller through countless races and a marathon. Every runner knows how hard it is to complete a marathon… Now imagine crossing the finishing line pushing a stroller with a 12 year old child in it! What an INCREDIBLE accomplishment!
Here are a few more pictures of Marilena during some of her races 🙂 The amazing Maria Polyzou, one of the best runners and my favourite athlete and role model by far, is also one of the people who helped Marilena and her dad in their running endeavours !
I had the opportunity to speak with Marilena’s mum and dad, mrs. Anna Kyrozi Gerogianni and Mr.Vassili Gerogianni and to ask them a few questions about their struggles of raising a child with a rare disease and also about their motivation as a family to start this running journey.
So here is my Q&A with them 🙂
Q: How do you communicate with Marilena?
A: We communicate with Marilena in our own unique way! She can pronounce a small number of words not very clearly. We usually ask her closed questions where she replies with “yes” or “no”. She is learning to communicate with a special application on a tablet that will help her let us know what she wants.
Q: How did you decide to run all these various events and especially a marathon, with Marilena, and why?
A: I was inspired from a video I saw on YouTube of team Hoyt (Rich & Dick Hoyt – father and his disabled son). They have ran more than 1000 races and even participated in iron man races together! When Rich and Dick ran their first race, Rich told his dad: “Dad when we race I feel that my disability disappears”…. So I decided to run races with my daughter to make her disability disappear, at least for as long as the race is. She really enjoys participating in races and is proud of her metals! Marathon races are very demanding and challenging. Finishing a marathon (especially the authentic course, which is even more demanding), with Marilena, makes the messages we want to puss even more powerful.
Q: Does she enjoy the races?
A: Marilena enjoys the races very much. We even take our small dog with us. She enjoys people cheering for her and shows her medals with pride! After a race ends she “asks” when the next one will be!
Q: Is there any special preparation required for Marilena to safely participate in the races?
A: The only preparation is the construction of the custom made running chair which was “donated” by Dimitris Korres who designed and constructed the chair. He has also constructed a unique car named “project 4”.
Q: Are there any regulations currently in Greece regarding strollers/wheelchairs participating in running events?
A: I would say that they are neither allowed nor restricted . However in all races we have participated we have been welcomed. Regulations are more strict (in some races) for handcycles.
Q: Tell us a few words about the “Let’s all hug Marilena” movement. What are you trying to achieve through this?
We have printed T-shirts with the logo “Let’s all hug Marilena” and sell them in order Marilena to be able to make all therapies she needs everyday (i.e. physiotherapy, speechtherapy etc). In Greece the therapies are very expensive and the country only returns us a very small amount.
Q: How could someone help and get involved with “Let’s all hug Marilena”?
A: Everyone can order Marilena’s t-shirts which are in sizes S, M, L, XL and XXL and colours white, black, grey, pink, blue electric. There are also small sizes for children of ages 5-6, 7-8 and 9-11 in white, pink or blue electric. The cost of the T-shirts are 10 euros each. If someone wants to order a t-shirt, he can communicate with me either with a messaged in facebook (Anna Kyrozi Gerogianni) or Marilenas group “Marilena, an angel on earth: https://www.facebook.com/groups/826245597428213/ , or with an e-mail to: firstname.lastname@example.org
Q: Any future races coming up for the dynamic running duo (or should we say trio since there is a puppy with them as well)?
A: The next race will be in the Athens Half Marathon event on March 20th. We have ran the Half Marathon for two consecutive years. Last year we ran the half Marathon and a few minutes after we finished the 5k was starting. So we also ran the 5k too. That 5k was very special because Maria Polyzou (the greek Marathon champion) ran with us pushing Marilena’s chair. We plan to participate in many more races in the years to come. Furthermore we plan to make more running chairs so more disabled children can feel the unique feelings a race can give you.
Many thanks to both of Marilena’s parents for sharing the story of their unique little girl with us here at Tale of two runs, and I wish them best of luck in their upcoming races! Stay tuned for many interesting stories 🙂