Special Bikes, Paying it Forward
Donation protected
We are starting a new GoFundMe page in hopes of paying it forward. You can read the story below about our original journey. My husband and I and everyone at www.aceperfromanceauto.com are hoping to grant the wish of another amazing specail needs kid in our community! Donate here or in person at APA located at 1730 W Sunrise Blvd Gilbert AZ
One night in September 2014 I was laying in bed whilst living back at mum and dads and I came across a Facebook Group called IRun4 Michael, I loved it and signed up in an instant, I was training towards my first marathon in April 2015 and the thought of dedicating my runs to someone else really appealed to me and made me happy. IR4 was founded by a man named Tim Boyle, who was inspired by a close friend who was bravely battling bilateral hip dysplasia. After hearing that Tim was planning to head out for a run, his friend said, “You can run for me anytime!” and with that, a movement was started. Tim began dedicating every mile to his friend, Michael, who would never be able to do what Tim was doing. The group started small…Tim and some close friends putting miles in for people they knew who would never be able to be active despite the desire to do so. The group grew…and grew… the IR4 family now numbers in the thousands of runners. In fact, there is a waiting list of runners waiting to be matched with their buddy - their honorary runner, teammate, coach, who we as runners carry with us in our heart and spirit as we run…or bike, swim, lift, etc. We dedicate each mile, each minute, of effort to our buddies. We keep our buddies updated via a private group Facebook page, posting our activity and sometimes pictures and videos so our buddies stay involved in our training and workouts. It allows them to be a very intimate part of something that they otherwise may have never gotten to experience. I was over the moon when six months later on March 18th 2015 I was matched with a gorgeous girl I knew then only as Kylie. Kylie has Mitochondrial Disease, more specifically Leighs Like Syndrome. Leigh syndrome is a severe neurological disorder that usually becomes apparent in the first year of life. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression) and typically results in death within two to three years, usually due to respiratory failure. A small number of individuals do not develop symptoms until adulthood or have symptoms that worsen more slowly. You can learn more here http://www.umdf.org/types/leighs-disease/ Kylie was born beautiful baby healthy as could be. All throughout her pregnancy Kelly, her mom, knew something was off. She couldn’t explain what or why but as days turned to weeks, months and years it became apparent mom was right. Kylie was delayed in milestones but Drs kept telling her she was wrong. By the time Kylie’s third birthday rolled around she was army crawling, cruising furniture, eating like a piggy and could sign over 100 signs. February of 2007, Superbowl weekend Kylie deteriorated badly. Kylie and Kelly were in and out of the hospital until they finally believed Kelly that something was wrong and admitted her. The next month was spent having test after test. Kylie could not hold her head up, eat or speak. After 30 days in the hospital mom was told to take her home and enjoy her, there was nothing they could do or find wrong. Kylie had a feeding tube placed and they started from scratch teaching her things and adapting her entire world. A few months later Kylie was diagnose with a clinical diagnosis of Leighs Disease at the Cleveland Clinic. Kelly was told the chance of Kylie seeing 10 was slim and to do her best to give her a great life because its unsure how long it will be. They continued on their journey of trying to help her. They went to Cleveland, Atlanta and California for answers but science just had not caught up with her yet! In 2012 Kylie finally had a gene mutation show up on her blood work. The FARS2 gene. Very few documented cases of this gene, all with terrible outcomes and outlooks. No cure, no real answers just more questions. The journey continued only to be disrupted yet again in Nov 2013. Kylie started throwing up and it threw her into a tail spin that she almost didn’t recover from, another month was spent in the hospital, more tests and this time answers nobody wanted to hear. Disease progression. They missed Thanksgiving but made it home for Christmas and have spent every day since appreciating life and all that Kylie has to offer. She is doing amazing again, sassy and strong with a smile and laugh that is contagious! For the last 2 years and more Kylie has been my inspiration to be the best runner I can possibly be, she is in short my absolute hero, she is the bravest, strongest, craziest, happiest kid I know, I never knew it was possible to love someone like this when you have never met them, that goes for her whole family, her mum Kelly is amazing and we speak regularly on Facebook, talking about everything that is happening in our lives. I knew pretty quickly after being matched, that one day I would want to meet Kylie, Kelly, her brother Dylan and the whole family, I have thought about it many times. I knew if I ever did I would want to incorporate it with a big run, I found the perfect one and decided to put a plan in to action. So for those that don't already know in January 2018 I am flying to the US to meet my beautiful girl, her family, her friends and to run the Arizona Rock and Roll Marathon!! There are no words that can say how excited I am about this, every time I think about it actually happening I want to cry. Its going to be a dream come true when I hold her in my arms and tell her what she means to me! Its all booked, and now all I have to do is count down the days and train for the 26.2 miles I will run while I am there. It will be so special to run this marathon knowing, I not only have Kylie with me the whole way in my heart, as I have done on every run since March 2015 but also there supporting me and watching me cross that line! I can not go all this way without raising some money, Kelly and I have spoken a few times about what to do it for and I am honoured to say that I am going to be raising money to buy a Wheelchair Bicycle Tandem for Kylie, this will mean that when Dylan or anyone else goes out for a bike ride, Kylie will be able to go with them! She will be able to participate in a childhood activity we all take for granted! You can look at the bike here http://www.frankmobility.com/duetfeat.php These bikes do not come cheap, so anything I raise will be wonderful, and go towards this special bike for a very special girl. Please help me do this for Kylie, she would be amazingly happy to be able to get outside with her brother on a bike, I will be grateful beyond words. Thank you from my whole heart all my love Lou xxx and Kylie xxx
Help spread the word!
One night in September 2014 I was laying in bed whilst living back at mum and dads and I came across a Facebook Group called IRun4 Michael, I loved it and signed up in an instant, I was training towards my first marathon in April 2015 and the thought of dedicating my runs to someone else really appealed to me and made me happy. IR4 was founded by a man named Tim Boyle, who was inspired by a close friend who was bravely battling bilateral hip dysplasia. After hearing that Tim was planning to head out for a run, his friend said, “You can run for me anytime!” and with that, a movement was started. Tim began dedicating every mile to his friend, Michael, who would never be able to do what Tim was doing. The group started small…Tim and some close friends putting miles in for people they knew who would never be able to be active despite the desire to do so. The group grew…and grew… the IR4 family now numbers in the thousands of runners. In fact, there is a waiting list of runners waiting to be matched with their buddy - their honorary runner, teammate, coach, who we as runners carry with us in our heart and spirit as we run…or bike, swim, lift, etc. We dedicate each mile, each minute, of effort to our buddies. We keep our buddies updated via a private group Facebook page, posting our activity and sometimes pictures and videos so our buddies stay involved in our training and workouts. It allows them to be a very intimate part of something that they otherwise may have never gotten to experience. I was over the moon when six months later on March 18th 2015 I was matched with a gorgeous girl I knew then only as Kylie. Kylie has Mitochondrial Disease, more specifically Leighs Like Syndrome. Leigh syndrome is a severe neurological disorder that usually becomes apparent in the first year of life. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression) and typically results in death within two to three years, usually due to respiratory failure. A small number of individuals do not develop symptoms until adulthood or have symptoms that worsen more slowly. You can learn more here http://www.umdf.org/types/leighs-disease/ Kylie was born beautiful baby healthy as could be. All throughout her pregnancy Kelly, her mom, knew something was off. She couldn’t explain what or why but as days turned to weeks, months and years it became apparent mom was right. Kylie was delayed in milestones but Drs kept telling her she was wrong. By the time Kylie’s third birthday rolled around she was army crawling, cruising furniture, eating like a piggy and could sign over 100 signs. February of 2007, Superbowl weekend Kylie deteriorated badly. Kylie and Kelly were in and out of the hospital until they finally believed Kelly that something was wrong and admitted her. The next month was spent having test after test. Kylie could not hold her head up, eat or speak. After 30 days in the hospital mom was told to take her home and enjoy her, there was nothing they could do or find wrong. Kylie had a feeding tube placed and they started from scratch teaching her things and adapting her entire world. A few months later Kylie was diagnose with a clinical diagnosis of Leighs Disease at the Cleveland Clinic. Kelly was told the chance of Kylie seeing 10 was slim and to do her best to give her a great life because its unsure how long it will be. They continued on their journey of trying to help her. They went to Cleveland, Atlanta and California for answers but science just had not caught up with her yet! In 2012 Kylie finally had a gene mutation show up on her blood work. The FARS2 gene. Very few documented cases of this gene, all with terrible outcomes and outlooks. No cure, no real answers just more questions. The journey continued only to be disrupted yet again in Nov 2013. Kylie started throwing up and it threw her into a tail spin that she almost didn’t recover from, another month was spent in the hospital, more tests and this time answers nobody wanted to hear. Disease progression. They missed Thanksgiving but made it home for Christmas and have spent every day since appreciating life and all that Kylie has to offer. She is doing amazing again, sassy and strong with a smile and laugh that is contagious! For the last 2 years and more Kylie has been my inspiration to be the best runner I can possibly be, she is in short my absolute hero, she is the bravest, strongest, craziest, happiest kid I know, I never knew it was possible to love someone like this when you have never met them, that goes for her whole family, her mum Kelly is amazing and we speak regularly on Facebook, talking about everything that is happening in our lives. I knew pretty quickly after being matched, that one day I would want to meet Kylie, Kelly, her brother Dylan and the whole family, I have thought about it many times. I knew if I ever did I would want to incorporate it with a big run, I found the perfect one and decided to put a plan in to action. So for those that don't already know in January 2018 I am flying to the US to meet my beautiful girl, her family, her friends and to run the Arizona Rock and Roll Marathon!! There are no words that can say how excited I am about this, every time I think about it actually happening I want to cry. Its going to be a dream come true when I hold her in my arms and tell her what she means to me! Its all booked, and now all I have to do is count down the days and train for the 26.2 miles I will run while I am there. It will be so special to run this marathon knowing, I not only have Kylie with me the whole way in my heart, as I have done on every run since March 2015 but also there supporting me and watching me cross that line! I can not go all this way without raising some money, Kelly and I have spoken a few times about what to do it for and I am honoured to say that I am going to be raising money to buy a Wheelchair Bicycle Tandem for Kylie, this will mean that when Dylan or anyone else goes out for a bike ride, Kylie will be able to go with them! She will be able to participate in a childhood activity we all take for granted! You can look at the bike here http://www.frankmobility.com/duetfeat.php These bikes do not come cheap, so anything I raise will be wonderful, and go towards this special bike for a very special girl. Please help me do this for Kylie, she would be amazingly happy to be able to get outside with her brother on a bike, I will be grateful beyond words. Thank you from my whole heart all my love Lou xxx and Kylie xxx
Help spread the word!
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APA Total Car Care
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Queen Creek, AZ