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I would like to take a minute and share what is important to me, My Family and Friends! However, it is family that has always kept me grounded. Through life’s many challenging events my family has always been by my side and has taught me about patience, compassion, and loyalty. My family is certainly made up of the typical Mother, Father, Sister, Brother, relationships but over the years my family has grown into those friends and acquaintances who have both touch my life and those who I may have touched. It is this sense of family that has inspired me to give back by providing an avenue to support two very special causes to me: ALS Association and Autism Speaks. I want you to join my T.E.A.M. TRI-UNITED by supporting Autism Speaks by Donating Today in honer of my Daughter Maddie.
Madeline “Maddie” Allen: Daughter: Born in Oct, 1999. Diagnosed 2000 with Grade 5 ROP-Totally Blind, ROP Retinopathy of Prematurity. ROP is a Retinal detachment of the eye due to premature birth. Diagnosed 2017 with Aspergers-Autism. Aspergers is a condition on the Autism Spectrum that affects the ability to effectively communicate and socialize.
Maddie was born 4 months premature and delivered by C-section at 24 weeks gestation. She weighted only 1 pound 4 ounces, considered a micro-premie. The doctors told us she would not survive the first 24 hours. Then, she wouldn’t survive the next 24 hours and again and again she proved them all wrong. She lost weight over the first few days down to 15 ounces about 450 paperclips, to put it into perspective. She over came a Brain Bleed, Gastric Issues, and was discharged close to her original due date as a miracle baby with no issues! Unfortunately, 1 week later our lives changed once again as we faced another set back. She was seen by an ophthalmologist and was diagnosed with Grade 5 ROP. We attempted to have surgery in her right eye to preserve some light perception however, it was unsuccessful and she is now totally blind from ROP. We were upset but the focus was “Moving Forward” and doing what was best for her. Then around 10 months of age, while changing her diaper, we discovered she had a hole in her back and was leaking a clear yellow fluid. We found out later that day after seeing many specialist she developed an open track to her spinal cord and had to have emergent spinal surgery which was later diagnosed as a tethered spinal cord and underwent a laminectomy to follow the opened track and finally close it surgically. Fast forward 10 years Maddie progressed amazingly well as she faced the obstacles in her way with with strength and bravery that is simply inspiring. We noticed she had a social disconnect but, all of the professionals, told us it was a “Blindism”, something that blind children do because they are visually impaired. It wasn’t until she was in High-school that it became obvious that there may be something else going on and she was then diagnosed with a form of Autism called Aspergers. She is now attending a local community college and trying to find her way. She is passionate about Music, plays by ear, and is tone-perfect. She has an imagination like no other-especially with her invention ideas. Memory is a gift for Maddie and can recall events and dates with amazing accuracy. She is very literal and strives in a more structured setting. Change is difficult and holding a conversation can be challenging at times. Maddie continues to be our miracle and has touched more lives than most adults 2 and 3 times her age.
Lessons I have learned being Maddie’s father. Keep dreaming but be flexible, allowing time to change and adapt to challenges in front of you. Socially, I think most say that kids can be mean - I have witnessed more rudeness from Adults who stare and at times literally fall down as they turn to watch Maddie walk by with her cane. Children talk and ask questions and are open and honest Adults can be less than socially appropriate at times. I wonder what is wrong in our society that created this social blindness and discrimination and what is considered “normal”.
The patience I learned that day in the woods with Uncle Joel has helped me be a better father to Maddie. The internal strength and resilience I have learned from Maddie inspires me while training. I will surely draw on this inspiration during the 70.3 Ironman. Another benefit of these lessons is adapting to my personal limitations, as Maddie has, will hopefully get me across that finish line in Oct. 2022 in North Carolina. Thank You Maddie for teaching me more about life than any book could have, I, We, love You!