Kristie Holly Naimi was born on January 15th, 1995. She was born with Rothmund-Thompson Syndrome which is a rare, inherited disorder that affects many parts of the body, including the skin, eyes, bones, hair and teeth. She was one of six children, she had two older brothers, two older sisters and a younger brother. She was Chaldean American and a Catholic Christian. Kristie passed away on March 29th, 2016 (21 years old).
Growing up, Kristie felt as though she was the same as everyone else, just another beautiful child running and playing while living her best life. It wasn’t until she matured enough to notice the people staring at her and pointing at her while talking about her pretty much any place she went. Kristie, just like any other young girl or boy dealing with a syndrome or disability, not only had to deal with her symptoms of her syndrome and how it affected the way she lived her life on a daily basis, but had to do it all while most people around her treated her very different than your average human being. It’s safe to say that there was a point in her life where she felt very alone, unsure of herself and most of all began to lose the amazing confidence she once had.
Anybody who knew Kristie would tell you she was one of the strongest people they ever had the pleasure of meeting. Nothing was going to keep her down for long and sure enough she came to accept the fact that she was so different from everyone else and found happiness in being born the way she was. Somehow Kristie was able to find more happiness in her short-lived life of only 21 years than most people can find in 100 years on earth.
Kristie created her own motto "Stay Positive and Keep Smiling" And no matter what life threw at her or how tough things ever got for her she continued to tell herself and everyone she loved to stay positive and that everything will be ok. To live in a positive mindset about every aspect of her life rather than a negative mindset she was able to attract positive energy and people and began to absolutely love life.
Kristie loved music and going to concerts she spent a lot of her time in her room on her computer jamming out and downloading new music. She loved to read books and watch movies a lot. She started her own YouTube account to try and spread positivity to the rest of the world and she was so good at it. The stay positive clothing brand was also her idea, and she meant for it to help others stay positive and keep smiling throughout their days. She wanted to help people as much as she can, and she wanted to help raise awareness for her syndrome in the process.
Kristie as a person passed through life with flying colors and to think that she was able to do all of this with the hand she was dealt in life is something to bewilder. For all of you who haven't had a Kristie in their life, we implore you to look her up and watch her YouTube videos and surely you will be able to relate to her and appreciate her and the message she was trying to spread in one way or another.
May God rest her soul, and may her life's work continue on through her stay positive motto that she left behind to help us all stay positive and keep smiling!
Rothmund-Thomson syndrome is a rare condition that affects many parts of the body, especially the skin. People with this condition typically develop redness on the cheeks between ages 3 months and 6 months. Over time the rash spreads to the arms and legs, causing patchy changes in skin coloring, areas of thinning skin (atrophy), and small clusters of blood vessels just under the skin (telangiectases). These skin problems persist for life and are collectively known as poikiloderma.
Rothmund-Thomson syndrome is also characterized by sparse hair, eyebrows, and eyelashes; slow growth and small stature; abnormalities of the teeth and nails; and gastrointestinal problems in infancy, such as chronic diarrhea and vomiting. Some affected children develop a clouding of the lens of the eye (cataract), which affects vision. Many people with this disorder have skeletal abnormalities including absent or malformed bones, fused bones, and low bone mineral density (osteopenia or osteoporosis). Some of these abnormalities affect the development of bones in the forearms and the thumbs, and are known as radial ray malformations.
People with Rothmund-Thomson syndrome have an increased risk of developing cancer, particularly a form of bone cancer called osteosarcoma. These bone tumors most often develop during childhood or adolescence. Several types of skin cancer, including basal cell carcinoma and squamous cell carcinoma, are also more common in people with this disorder.
The varied signs and symptoms of Rothmund-Thomson syndrome overlap with features of other disorders, namely Baller-Gerold syndrome and RAPADILINO syndrome. These syndromes are also characterized by radial ray defects, skeletal abnormalities, and slow growth. All of these conditions can be caused by mutations in the same gene. Based on these similarities, researchers are investigating whether Rothmund-Thomson syndrome, Baller-Gerold syndrome, and RAPADILINO syndrome are separate disorders or part of a single syndrome with overlapping signs and symptoms.
Rothmund-Thomson syndrome: MedlinePlus Genetics
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We are dedicated to supporting children and their families who are affected by Rothmund-Thomson Syndrome. Our mission is to provide comprehensive assistance and resources to overcome the daily challenges posed by this rare genetic disorder. Through education, advocacy, and community engagement, we strive to raise awareness, foster hope, and empower families to navigate their unique journeys with resilience and confidence.
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