the use of custom arm splints to keep her from mouthing her hands. There really is no major body system that Rett does not affect. Harper sees many different specialists with UF Health, including specialists in gastroenterology, cardiology, ophthalmology, orthopedics and most recently neurology. She also has a rigorous therapy schedule, to which we hope to add equine and aqua therapy as it benefits so many children with Rett. Harper loves attending school at Newberry Elementary, but we often have to pick her up early for therapy appointments or visits to her specialists. She has been sick with upper respiratory symptoms more often than not. Looking toward the future In January of 2017 we traveled to Atlanta to meet neurologist and Rett Syndrome specialist Dr. Daniel Tarquinio. Currently, there are no Rett specialists in Florida. Dr. Tarquinio was able to provide
us with a better picture of Harper’s specific gene mutation. He informed us that Harper’s specific mutation has NEVER been recorded and is completely unique to her. There truly is no one in the world who compares to her and he nicknamed her “his unicorn.” Harper appears to no longer be in the destructive phase of “regression.” We are hopeful that the disease stops ravaging her body and robbing her of her abilities. Going forward we will continue to follow up with her team of specialists to make sure she does not develop more trademarks of Rett. We hope to inspire other families to remain positive even when the situations in life you have been given seem so unfair. We choose happiness and joy. We choose to live life to the fullest and provide Harper with all the opportunities we can. Our sweet Harper “Bean” has the sweetest smile, the most adorable evil-ish laugh and is feisty and sassy as all get out. She is a serious fan of “Toy Story” and those little yellow Minions make her giggle like nothing else. She is a fighter. She is tiny, but she most certainly is fierce.
Meet Harper's Siblings!
Emmett Since Harper was diagnosed last year, our youngest, Emmett, has been seen by the Early Steps program as well as a developmental specialist. He is developmentally delayed in many areas, including speech. The specialist is concerned that Emmett may be on the autism spectrum. We will return to the specialist after Emmett has had six months of therapy as well as time in preschool. He will join his sister in the ESE program at Newberry Elementary when he turns 3 in November. Emmett, as of August, has begun speech and occupational therapy, bringing our total therapy visits to 10 per week.
The Youmans are an Ambassador Family for the Children's Miracle Network and participate in Dance Marathon. Harper is sponsored by the Pre-Legal Honor Society — Team Harper.
HAYDEN Hayden, our 7-year-old, has had a lot of growing up to do at a young age. She has been exposed to many things that most children of her age do not experience. However, we feel that she has gained personality traits that many individuals never acquire. She is one of the most strong and empathetic people (adults included!) I have ever known. We work hard on giving her one on one time. Her teacher last year participated in a “buddy reading” program in which Hayden’s first-grade class would pair up with a child from Harper’s pre-K class and read to them. Both of the girls loved it. She currently participates in gymnastics and has also recently joined Girl Scouts.
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gigglemagazine.com | october/november 2017