We're Mark and Marie Manor from Phoenix, Arizona. We're native Arizonans but have had the good fortune to visit Sweden several times. The first time, was in 1988, when Mark took a player coaching position with the Swedish National Baseball Organization. While there, he was befriended by the Suhrs, a Swedish family. We have remained friends since, traveling to see them every few years as they have travelled to see us. Over the years, we've hosted their daughter, Lisa, and son, Jimmy. This story is about Jimmy and his family as they fight to conquer what seem like impossible odds for their very special daughter, Tuva. We've agreed to help the Suhr Family raise funds in order to travel twice a year to Philadelphia, where an Institute helps families from all over the world effected by this very rare brain disorder. The costs are prohibitively expensive. After exploring every option within the Swedish healthcare system, the consensus from their doctors was that there was very little, if any hope for Tuva's future. We've started this fundraising effort with our own $500 donation, we can't do it alone. Below are her father's own words and pictures of this precious little girl and her loving parents who would do anything in the world for her.
Jimmy Suhr, Stockholm Sweden, December 2013,
"This is a picture of Tuva, two years old. A picture tells a thousand words, and yet, it doesn't tell what a fighter our little girl is. It doesn't tell that she has been fighting a type of epilepsy called infantile spasms since she was three months old. It doesn't tell that she is putting up a fight against a brain injury called Lissencephaly- a genetic disorder where the nerve cells of the brain are disorganized, making the surface of the brain flat. This causes neurological problems in every area of development.The Swedish doctors have told us not to expect much "“ don't expect her to be able to see, don't expect her to hear, don't expect her to feel and certainly, don't expect her to move independently.
Again, a picture tells a thousand words. It doesn't tell that she wakes up every morning and embraces a comprehensive neurological stimulation program with exercises for improving her vision, hearing, tactility, respiration and mobility. She does so with a smile on her face. Why? Probably because she loves to see, hear, feel and- most of all- move independently!
This year she broke the barrier and started crawling, the first step towards freedom of mobility. This would not have been possible if we had not found The Institutes for the Achievement of Human Potential. IAHP has been working with brain development since the fifties and educates parents from all over the world on how to help their brain injured children live a better life. Tuva was nine months old when we flew to Philadelphia, what seemed to us like the other side of the world, to get her accepted in their intensive program. Since that day our family has been working round the clock to follow the guidelines from the IAHP and we have been flying back to Philadelphia every six months for evaluation and reprogramming. Why? Because every day we see how much it gives her! Every day we get to see her increased development.
The past six months has been rough for Tuva. Her epilepsy is hard to treat. For months she has had multiple heavy episodes daily, combined with small, rapid seizures just seconds apart. At the end of this summer we lost hope. The seizures drained her of all her energy and her smile disappeared. In four months we tried five different medications with no effect. Swedish healthcare is free, but the patient has very little influence on treatment or care. Because of this, Tuva has seen eleven doctors in four months, none have gotten to really know her or understand her condition. As a result, the doctors have told us that Tuva might never get better, in fact, that she was beyond help. For every doctor we saw that fact got more and more true to us, even though our hearts told us something different. But IAHP never gave up on Tuva. They were our hand to hold in the storm and reminded us about our happy little girl, who right now was fighting a tremendous battle. They reminded us to be strong for her and help her fight- help her to win! And she did!
Today Tuva is back to her self- a happy, strong and fantastic girl- laughing, crawling and spending all her waking hours doing exercises for her vision, hearing, tactility, respiration and mobility. Why? Because she loves to see, hear, feel and- most of all- move independently!
In the tough months behind us we have come to realize how important the support from the Institutes is for us and for Tuva. The support is worth all the money in the world, but the costs of traveling across the world every sixth months is getting too to hard for us to manage. That's why we ask You for help to make it possible for us to keep taking Tuva from Stockholm to Philadelphia and The Institutes for the Achievement of Human Potential. We ask you to be a part of changing our daughter's life."
- Anna Roos
- Stephanie Stirrup
- Daniel Florstedt
- Anne Alves
- Tim Schannep
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