Help Teagan sing her Fight Song

Amy Dugliss is organizing this fundraiser on behalf of Melanie Peden.

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Teagan is a sweet, spunky 8 year old little girl with a sense of humor, smile and laugh that lights up a room. She fights each battle with eyes wide open and has an incredibly positive outlook about visiting her team of 17 pediatric specialists in Rochester, Boston and New York City. One of her favorite songs is “Fight Song”, which she sings with her mom and dad before and during hospital visits. As her brave little body has faced 8 surgeries and years of countless diagnostic procedures, Teagan and her parents have had the faith to sing “I’ve still got a lot of fight left in me” as she fell asleep to anesthesia 16 times.

Thanks to the generosity of Teagan’s friends like you, the 7th year of tiny Teagan’s courageous life included being able to travel to meet some amazing doctors who have been able to give her parents some answers on how to make her life more comfortable. Although her multiple new diagnosis are difficult to accept (permanent nervous system damage after renal failure, neurogenic bowel and bladder, chronic intestinal pseudo obstruction, Ehlers Danlos Syndrome and Dysautonomia) her family is grateful to have the information that they need to chart a clear path to brave the next leg of her journey together. We cannot express how grateful Teagan and her family are for the new friends near and far who have joined her Go Fund Me family, seeing all the ways that people care is a bright spot in our lives and your support is a godsend when the hardship of unexpected medical expenses surface.

All of your support will be used to help Teagan and her family to continue singing her “Fight Song” and continue their journey towards the brightest possible future for her, by helping with:

Extensive travel expenses to 17 pediatric specialists, out of town medical appointments and hospitalizations (ex. Weill Cornell Medical Center’s Motility Clinic in New York City, countless trips to Golisanos Children’s Hospital in Rochester and the Pediatric Motility Center at Boston Children’s Hospital)

Essential Adaptive equipment (ex. New leg braces every 6 months, specialized shoes to fit leg braces) that insurance will not fully cover

Adaptive stroller seat inserts as she grows

Medications, surgeries and diagnostic procedures, ultrasounds, MRIs, medical dressings and wraps for central lines to secure Broviac tubing that are not fully covered by insurance.

Medical equipment not covered by insurance including children’s medical mattress lifts and pillows specially made to support kids with night time airway and breathing issues to be able to catch their breath and rest easier.

Teagan’s Medical Journey

When Teagan was 2 years old, she was diagnosed with VUR (Vesico Ureteral Reflux), which caused scarring and infections in her kidneys when urine refluxed from her ureters back up into her kidneys. After a surgery to implant artificial valves into both ureters, Teagan required an open bladder surgery in 2013 to re-implant her ureters into her kidneys. Post-surgical complications resulted in a terrifying full renal failure. To help her overcome kidney failure, a temporary nephrostomy tube was inserted because her body wasn’t able to eliminate urine without it. Teagan’s family remains grateful every day for the miracle of her conquering renal failure even after the removal of her nephrostomy tube! Their gratitude has not dimmed, but has been mixed with the need for a lot of courage, as they learned that central nervous system complications have caused permanent neurogenic bowel and bladder (no sensation or control over bowel and bladder function) and paralysis of the lower part of her large intestines. Additionally she has an airway clearance impairment that interferes with her night time sleep and breathing.

As Teagan has grown in her sense of joy and adventure, her medical challenges have kept pace. Teagan and her family bravely faced a diagnosis of Chronic Intestinal Pseudo Obstruction/Enteric Neuropathy (a degenerative neuromuscular condition of the digestive system) after travelling to the Motility Center in NYC Weill Cornell/Columbia University Hospital for a painful test called Colonic Manometry. She will need to travel to New York City with her mom and dad every 4-6 months.

In 2017, Teagan had surgery to insert a Cecostomy tube into her body. This allows her to flush food and stool through her paralyzed intestines via her C-tube on a daily basis to be able to eliminate waste from her body. Teagan does this with her cheerful warrior princess spirit each night with her mom and dad’s help, all while watching music videos on her tablet and singing along next to her IV pole decorated in bright streamers and photos. When Teagan was asked to write her answer to “What is your Superpower”, our tiny super girl proudly answered “C-Tube”!

Teagan’s positive attitude is still shining bring and inspiring her family, teachers, classmates and community, despite being newly diagnosed with Ehler's Danlos Syndrome (which causes chronic pain, fatigue, and countless limb dislocations) and Dysautonomia (which causes the body to not be able to regulate her autonomic nervous system including heart rate, oxygen saturation and breathing and causes frequent nighttime wakings and vital dysregulation). Teagan struggles with chronic muscle exhaustion from EDS and Dysautonomia, some days she does not have the endurance to walk long distances or participate fully in some activities that other kids her age enjoy (like playing on the playground, gym class, etc.). Teagan uses HEKO leg braces, SMO ankle braces, braces for wrist dislocation and special orthotic shoes to fit her braces. She works hard in Physical Therapy to keep her balance and stay safe from falls.

Braces are more fun to wear when they are fun patterns – Teagan enjoyed picking out braces covered with cats wearing glasses and when she quickly outgrew those, pink braces with princesses and castles! These have helped her so much, but there are times when she is unable to walk and has to use her sparkly pink wheelchair, her adaptive stroller or to be carried. Despite her challenges, Teagan delights in the wonderful community of people around her and always works hard while keeping everyone around her upbeat with her funny little sense of humor. Teagan and her family are eternally grateful to have been supported by her new friends at “Make a Wish” and the Ronald McDonald House (which she calls “Ronnie D’s house”) and by you.

Amazing friends like you from Teagan’s Go Fund Me family have helped Teagan to be able to participate as fully as possible in her “dream come true” of going to school, where her favorite subjects are computer, art class and adapted gym and she loves spending time with her wonderful support team and friends! In between medical treatments at home and at out of town specialist appointments and hospitals, Teagan’s sisters, brother, mom and dad make sure that she has lots of time to play and enjoy family time together. They love to do her favorite things with her - singing to the Moana soundtrack, playing with her collection of baby dolls (this 7 year is an expert on how to take care of babies, just ask her if you have any questions!) playing the “Give Kids the World” version of Candyland, Playdough and video games, watching her favorite movies Frozen, Moana and UP, and reading her favorite book “The Kissing Hand”.

In July 2018 Teagan had a central line (Broviac) placed to ease the complications associated with countless IV insertions, bloodwork, IV medication administration and IV infusions for hydration. Like all of her other superhero gear she wears it proudly and continues to inspire us all to live, as Teagan says, “our best life ever!” .