For the Love of a Child
Nino arrived with an uneventful delivery, but immediately after, Tonia sensed that something was different. As difficult months came and went, and as Nino repeatedly failed to meet developmental benchmarks, Tonia and Brett began seeing specialists in hopes of finding answers to the questions that were coming daily. Unfortunately, the answer was scarier than anything Tonia or Brett had considered. There was a rare disorder called Lesch-Nyhan Syndrome, a genetic mutation in the Y-Chromosome that is most often passed from mother to son, but is occasionally (as in Nino’s case) a spontaneous mutation.
Tonia and the family soon heard about all of the horrific realities of Lesch-Nyhan Syndrome; life in a wheelchair and restraints, debilitating gout, feeding tubes, hostility and aggression, renal failure, and worst of all, uncontrollable self-mutilating behaviors. Tonia was told by numerous people that the first answer was to accept the unavoidable and to embrace the inevitable, including divorce. Instead, as time went on, Tonia and her family discovered that Nino was not defined by LNS, Nino defied LNS! Nino was not a list of symptoms and behaviors, Nino was a stunningly handsome boy with a million megawatt smile and a contagious personality, a boy made up of nothing but ornery humor, charm and willpower!
Tonia educated herself on the medical facts of Nino’s syndrome. She embroiled herself in the world of insurance, therapies, specialists, specialized equipment, and resources for people with disabilities. In the process of so doing, a change was made that would allow her to spend much more time with her beautiful son, and would also allow her to help other special needs individuals and families the way that she, Nino, and their family had been helped and began working for Abilities First as a Support Coordinator, where numerous amounts of support and resources were discovered for individuals and families facing these challenges.
Three and a half years later, Tonia Welcome is a happily married mother of three. She works to improve the quality of life for people with disabilities, and she is a full-time mother to a little boy named Nino, who is the most remarkable little guy on God’s green Earth! Nino surpasses all expectations and limitations daily! Nino plays with his toys and his dog, he runs around the house at breakneck speeds in his little green walker getting into cabinets and drawers, and he lives for cars (or as Nino says, “GO-GO!!!”) of any size – Matchbox Bat-Mobiles or real-life trucks that take him to get his favorite treat, ICE CREAM!!!
Discovered throughout this journey by Tonia and her family is that there is a lack of knowledge and research concerning rare syndromes. The mission now is to help Nino overcome all challenges and obstacles; for Nino to achieve every dream and success that his abilities, talents, and unstoppable willpower will possibly allow; for Nino to simply live a happy and fulfilling life! Secondly, to help other people with disabilities where she can, and to educate people without disabilities that people facing the challenges are real people, with all of the normal desires and capacities for love, friendship, communication, entertainment, and joy that they themselves have.
Tonia and her family love Nino in an indescribable way, and they found that this love extends to all of these incredible individuals that so many only see as disabled. To learn more about Lesch-Nyhan Syndrome and ways to help families with support and receiving appropriate medical equipment necessary to care for their children visit: www.loveneversinks.webs.com
To learn more about Abilities First and resources /programs available to enhance the lives of individuals with disabilities visit: www.abilitiesfirst.net and www.artinspired.me
Kim Harrington, wife, daughter, businesswomen, friend, and mother of two boys views life as a journey. She views day to day obstacles as an opportunity to make life better. When an obstacle feels overwhelming, she embraces it with determination and optimism. It is Kim’s optimism and ability to find the good in any situation that many see as her gift.
When Kim was pregnant with her first child, she dreamt about what color his eyes or hair might be, would he be short or tall, or this or that? The one thing Kim never dreamt of was the news she would receive at her son’s four month well check. After all her son was full term and labor and delivery was considered
normal. As first time parents, both Kim and her husband attended their son’s appointments together. Kim recalls answering the nurse’s question, “Yes he grabs his toes but only with his right hand….” The pediatrician enters and performs the exam. Being first time parents the Harrington’s thought this was a “typical” examination. The pediatrician asked Kim to hold her son and have a seat next to her husband. This is the moment where their lives would be forever changed. The pediatrician explained, in his professional opinion he believed he was witnessing a partial paralysis on the left side of their son’s body. After an MRI and meeting with the pediatric neurologist they learned their son had suffered an in utero stroke, leaving their boy with the clinical diagnosis of: left side spastic hemiplegia, a form of Cerebral Palsy (C.P.). The medical professionals all assured Kim there was nothing she had done to cause this, there was nothing they could have done to prevent it from happening, and even if they would have known it was happening, there was nothing they could have done to stop the damage. They summed it up as “Bad Luck”.
After the initial shock wore off, reality set in. The Harrington’s had more questions than answers. The unknown future their beautiful baby boy faced was devastating and heart breaking. One question ran through Kim’s mind again and again, “How do I help him?” As mile stones were missed the Harrington’s relied on the guidance of medical professionals. They quickly realized therapies would be an essential step in helping their son. The therapists not only educated their son but they supported the Harrington family by teaching them how to help their son. One of the greatest things Kim and her family received was empowerment. That sounds so small but it enabled their family as a whole to move forward with optimism. This was the spark that ignited Kim’s passion for DCO (Developmental Center of the Ozarks).
DCO helps children and adults with disabilities maximize their ability to find success in their day to day life. DCO re-enforces and builds their confidence, self-control, independence and self-esteem. In the fall of 2009 the girls of DCO approached Kim for some ideas for a new fundraising event. After sitting at a local restaurant brainstorming ideas, and many tears later, the “White Party” was born. Everyone attends the party dressed in “White”. This will be the 5th year for DCO’s White Party. Through this event alone, Kim has helped DCO net over $160,000 in 4 years. The money DCO raises stays right here in our community. On average one hour of therapy costs DCO $160.00. If Medicaid assistance is used it only covers half of that cost. Funds raised at events like the White Party cover the other half. No child that qualifies for services is turned away.
Kim and her family are devoted to sharing DCO’s mission. They want all families that need support to seek education so they too can learn how to help their child. Kim shared that when she looks across the crowd at the White Party event, she feels a sense of unity and equality. Kim’s son wants nothing more than to been seen as an equal, not different. Wouldn’t you? It has been Kim’s ability to find the good in any situation that has been her greatest gift to her son. Kim wanted to leave you with one question:
“Can you tie your shoe with one hand? My son can! ”
Watch this video to learn more.
Cystic fibrosis (CF)is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Kadyn, struggles with both digestive and lung issues caused by Cystic Fibrosis. When healthy, she endures hours of breathing and bowel treatments daily. These treatments double when she is sick.
When Kadyn was diagnosed, Ryan and Katie knew little about the disease. They quickly learned Cystic Fibrosis is a lifelong and progressive genetic disease to which there is no cure. Kadyn was a born fighter and has been in the hospital numerous times in her short life. The family started sharing Kadyn's story with family, friends, and eventually social media. Through sharing her experiences and hearing how many people wanted to do something to help, Kadyn's Krew was formed.
Kadyn's Krew is an incredible group of people who have supported/prayed for/loved Kadyn. They raise awareness for CF, participate in The Great Strides Walk, held or participated in fundraisers, go above and beyond in many ways to help find a cure for Cystic Fibrosis. Since Kadyn was diagnosed in 2009, Kadyn's Krew has raised over $320,000 for the Cystic Fibrosis Foundation.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis (CF). Funding more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support.
To learn more about the Cystic Fibrosis Foundation visit: www.cff.org. Read about the beginning of Kadyn’s journey on the blog Katie started at birth: www.koyandkadyn.blogspot.com which has now merged with www.kadynskrew.com. Follow Kadyn’s Krew on Facebook and Instagram for more frequent updates: https://www.facebook.com/kadyns.krew and @kadynskrew.