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Daniel

Daniel, approaching age 2, is our tiny little hero with Holt-Oram Syndrome. He is a darling little boy who loves to play with tools, just like his dad, Jacob, whom also has Holt-Oram syndrome.

At just 20 weeks gestation, Lydia and Jacob went to an ultrasound checkup, and discovered Daniel would have a missing thumb. After some confusion among the staff and discussions with the radiologist, they determined he would also have short arms, and seven fingers. However, this was not a surprise. Daniel’s parents were aware of the genetic probability of Holt-Oram, and after 5 failed pregnancies, they were not at all saddened by this news. The doctor also had concerns for Daniel’s heart. People with HOS, also have holes in their hearts in-utero. We are all born with holes in our hearts initially, but during the first two days after birth, as we learn to breathe, the hole closes properly. For Daniel, this was not the case. At seven days old, the doctors determined the hole had not closed, and in fact was quite large. He had an ASD and VSD hole in his heart. His VSD repaired itself, however, his ASD was repaired. Meanwhile, his poor mother would see her sweet baby turning purple, go into heart failure, among other struggles with the HOS itself.

Daniel also had a rod placed in his arm, to help extend his forearm and literally separating his wrist so it could grow. His parents would have to crank the fixator rod in his arm to expand and stretch his wrist! Four times a day! Turning the bar created subtle changes, much like tightening braces, except in reverse. Poor Daniel would scream in pain, then snuggle with his momma for comfort.

HOS has a variety of severity. Daniel’s father is moderate. He is married, has two children and works as a handy man. Daniel is more severe. Holt’s syndrome is manageable but challenging. His father has brought a great understanding to their family, as well as others, showing and teaching them that he can do many things, including being a handyman, with short arms and eight fingers. Daniel’s parents understand that he will have challenges, but they also have hope for a great future!

Daniel is anything but broken! He is strong! Resilient! A curious little explorer! It is hard for his parents to watch him be in pain, go through various surgeries. What hurts more, is watching others treat him differently. His parents want others to know that Daniel should not be treated differently. They want him to explore, learn independence and fight his own battles, just like everyone else!

Daniel has an older sister, Jess. Their parents make a special effort to give attention to her, because it can be tricky balancing the health of Daniel, and giving Jess the same attention and affection. She loves her brother! Their relationship has its normal and expected challenges, as well as a few more.

Tiny little heroes have BIG HEROES for parents!

Thank you for reading! Please follow me on Instagram and Facebook at Sarah Lee Memories or follow the hash tag #tinylittehero to see my other stories.

Tiny Little Heroes is a passion project of mine. It combines my passion for medicine, children and photography! Thank you for all of your support with this nonprofit project. Please comment below or share with someone who needs to read this!

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Carmen

Meet Carmen, age 2, our Tiny Little Hero with Down syndrome.

Carmen is an eager, determined, and enthusiastic toddler! We chased ducks together, exchanged high fives, and became buddies fairly quickly! She is simply adorable and so easy to love!

Carmen has an extra chromosome. This makes her extra special. According to the Mayo Clinic, Down syndrome is a genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21. This extra genetic material causes the developmental changes and physical features of Down syndrome.

Julie, Carmen’s mother, knew while she was pregnant, that her baby girl would be born with Down syndrome, scientifically known as Trisomy 21. Julie’s first pregnancy was a stillbirth, which is why she chose to have genetic testing with each pregnancy. The testing is done around 16 weeks. She later had an amniocentesis (testing of amniotic fluid) to confirm that the baby would be born with down syndrome. Julie highly recommends genetic testing. Following Carmen’s diagnosis was, “Would you like an abortion?” As horrific as this thought would be to process, Julie is glad she agreed to the genetic testing. Carmen’s parents had time to prepare and understand what their daughter’s condition would mean for them and their family. The geneticist thoroughly explained all of the challenges, risks, and emotional struggles that would be involved with raising Carmen. Down syndrome varies in severity among individuals, causing lifelong intellectual disability and developmental delays. It’s the most common genetic chromosomal disorder and cause of learning disabilities in children. It also commonly causes other medical abnormalities, including heart and gastrointestinal disorders.

Because heart complications are common with Down syndrome, a prenatal echocardiogram followed her diagnosis of Down syndrome and determined that Carmen, did have a hole in her heart, a large perimembranous Ventricular Septal Defect (VSD). She later developed a leaky tricuspid valve from the pulmonary hypertension. Both heart defects were repaired during open heart surgery, after she was born, at just 5 Months old. She still has a minor leak in her tricuspid valve but it doesn’t affect her daily life. (Official heart diagnosis is congenital heart disease, large perimembranous VSD, moderate tricuspid valve regurgitation, and moderate (PDA) patent ductus arteriosus.)

Julie said the first year was very difficult. Learning how to help a child with Down syndrome, and adapt to a new baby can be challenging enough! However, Carmen also had pulmonary hypertension, and had to wear oxygen 24/7. She eventually graduated to wearing oxygen at night time only. She was also on medications to help with the pulmonary hypertension. Rotating medications, monitoring oxygen levels and balancing doctor appointments on a regular basis! Not to mention, Carmen is the youngest of 3 children. What a challenging first year! Carmen has been blessed with phenomenal parents!

After her heart surgery, she was on quite a few different medications. Julie’s mother recalls, “I remember getting ready for discharge after a long week at the hospital. The pharmacy staff came to go over the medications and our insurance. That’s when we found out that one of the medications, Sildenfil, would not be covered by our insurance. This medicine was similar to Viagra, and because of that, our insurance wouldn’t cover it. The cost of a small bottle of this medicine would be $4,000. It’s a common medication given to all young heart patients after surgery. Primary Children’s Hospital came to the rescue and offered to pay for the medicine. I couldn’t believe it. It was amazing to know that the hospital was not going to let my daughter leave without the care she needed. It still gives me chills. After her surgery, Carmen showed a quick and steady recovery, and 5 months after surgery she was able to get off all oxygen and meds!”

Carmen’s parents knew what to expect. They were terrified, concerned and even uncertain. But even still, they would not change anything! Carmen has brought so much light, happiness and love to their life, and to so many around her. Carmen helps people understand that being different is awesome! Sometimes we are afraid of what we don’t understand. Sometimes we stare, judge or make assumptions. Carmen helps people see and reciprocates love so easily and willingly. If only we could all be as kind and loving as Carmen!

Carmen takes a little longer than average to reach her milestones but she does reach them. She did not crawl until she was one or get her first tooth until she was 18 months old. But everyday she does something new and her parents are just amazed with her progress. Carmen is a fighter. Her great aunt gave her the nickname “Warrior Woman.”

Carmen’s mother wants people to know that Down Syndrome is not scary! “It’s beautiful, it’s fun, it’s unpredictable, it’s ups and downs, hard times and good, but it’s not scary. People with down syndrome can do anything. They need more opportunities to work and learn. We need to appreciate what someone with down syndrome has to offer. I want families who get the prenatal diagnosis to not be afraid like I was. I want them to know the child they are about to have will surpass all their wildest dreams and they will experience love and joy on a whole new level. You and your family’s lives will be enriched in ways you never knew possible. We were afraid. But thanks to Carmen, we now know that Down syndrome is a beautiful gift and you are lucky if you get a chance to love someone with it!”

Julie recommends Kids On The Move, a nonprofit organization based out of Orem, Utah. Julie says, “They have been a part of Carmen’s care since birth. They come into our home and work with her so she can reach her milestones and not fall too far behind. Carmen has worked with amazing physical therapists, occupational therapists, speech therapists, and she gets to do amazing classes like music and movement and horseback riding. They also provide many resources for parents. Kids on the Move has done so much for us! We love them so much!”

Thank you for reading! Please follow me on Instagram at Sarah Lee Memories or follow the hash tag #tinylittehero to see my other stories.

Tiny Little Heroes is a passion project of mine. It combines my passion for medicine, children and photography! Thank you for all of your support with this nonprofit project. Please comment below or share with someone who needs to read this!

Hayden

Hayden is our tiny little hero, age 17, with ASD, autism spectrum disorder.

Hayden is an extraordinary young man. He graduated early from high school and is already working full time in a cabinetry shop. He is extremely independent, talented and always on the move!

When I asked Hayden to describe autism, his response touched my heart. He said, [Autism] is a gift that I can use to educate others so they know it’s real. [Autism] is a struggle because I can’t do what the other kids do, even when I want to, like fitting in.”

Autism spectrum disorder can create some small and big differences. Here are some things Hayden and his mother would like people to learn about and be aware of:

Autism Awareness Fact 1: People with Autism Self Stimulate. But guess what SO DO YOU! Ever tap your foot during the day? Chew on your pen, twirl your hair, fidget with your phone, cross your legs and bounce your foot, pace back and forth while thinking, jump up and down when excited? People with Autism just have a harder time figuring out what is socially acceptable. Hayden has a pet snake, Lightening Bolt, who squeezes Hayden as he moves around and that gives Hayden’s nerves the deep pressure he needs to remain calm.

Autism Awareness Fact 2: People with Autism CAN be athletic. Hayden spends hours a day invested in his sports. Baseball, Football, Wrestling, Track, Basketball, Swimming, and Tumbling just to name a few!

Autism Awareness Fact 3: People with Autism CAN find employment, it just takes a special group of people to be patient and understanding. Foxwood, Hayden’s current employers, are perfect examples of what it takes to work with a person with Autism. They are flexible with hours, patient with the excessive talking (bless you), not scared away by the medications he needs to take during the day, and very direct in their instructions. The heavy work Hayden needs for his nervous system is what they need him for. Tearing out cabinets, unloading trucks, loading trucks, lifting and carrying-not something “the old people want to do” (as Hayden put it) but exactly what Hayden needs. Hayden is very blessed to have the opportunity to work with them.

Hayden’s mother is his greatest advocate! She is employed at Spectrum Academy in Salt Lake, Utah. She informed me about some preparations for Hayden turning 18. In her words she said, “As we prepare for his big 18th birthday, I want to address the concept of “fair.” There are a lot of adult services that we are looking into for Hayden and I’ve heard whisperings of “but that’s not fair” and they are right. It isn’t fair that Hayden is not “disabled enough.” But it also isn’t fair that Hayden is afraid to use the oven (it will melt your eyebrows into your eyes). It isn’t fair that Hayden gets told to shut up 60 times a day (excessive talking). It’s not fair that Hayden can’t access his traditional curriculum in a traditional classroom with traditional peers (too fast paced). It’s not fair that the air conditioner at church sounds like a jet engine in his ears and a light touch sends needles through his nervous system. It’s not fair that Hayden can’t sleep without medication. It’s not fair that Hayden struggles holding a job because he is so literal and inflexible in his thinking, with a thought process like “But the garbage isn’t full why would I empty it?” It’s also not fair that because Hayden is “not disabled enough” in the eyes of on lookers, he gets judged on a daily basis. And finally, while he has many teammates, it’s not fair that he only has one true friend. I wouldn’t change one thing about Hayden, but I would change the way others see him. If you could look into his heart you would see the most amazing person in all the world. I love this boy to the moon and back and I am grateful as he transitions into adulthood there are programs out there to help him be happy and successful!

If you feel like you have to fight for something and don’t know what to do you can call the Utah Parent Center or find someone with Special Education and they can help you.”

The resources Hayden’s mother refers to are Spectrum Academy, a school geared to those struggling with autism. Utah Parent Center which helps children with various needs and disabilities and Autism Speaks is a valuable resource to learn more about Autism Spectrum Disorder. She also learned a great amount about I.E.P‘s, individualized education plans. She advocates for the child’s individual participation in their own IEP’s. She says your child should know what is in their IEP so they can advocate for themselves. She states, “If there was a problem (with the IEP or in school) I always emailed or called the teachers but the next day I would have Hayden go in and talk with them so he had an opportunity to have his voice heard. Once Hayden was in high school, he led the IEP and made major decisions on what goals and accommodations he felt that he needed. 

Isn’t that incredible? Hayden graduated high school early and was leading his own IEP’s. Such incredible growth and progression! Defying stereotypes is exactly why Hayden is my Tiny Little Hero.

Thank you for reading! Please follow me on Instagram and Facebook at Sarah Lee Memories or follow the hash tag #tinylittehero to see my other stories.

Tiny Little Heroes is a passion project of mine. It combines my passion for medicine, children and photography! Thank you for all of your support with this nonprofit project. Please comment below or share with someone who needs to read this!

Kamden

Kamden, our Tiny Little Hero, age 3, with several diagnosis, including Klippel-Feil Syndrome, Sprengels Deformity, Chiari Malformation, Ociptalcervical Instability.

Kamden is a typical toddler. He loves Curious George, exploring, and loves to read. Although Kamden has some bone formation issues with his back, he is developmentally on track! That wasn’t always the case. His cerebellum needed to be expanded in his surgery, at age 3, which created access to his brain allowing him to learn and stay on track developmentally. He learned his colors and alphabet, speaks in full sentences, shows mind blowing improvements since his surgery. His mother even got excited when he got his first temper tantrum! That is a developmental milestone that many, if not all, parents take for granted!

Kam, was diagnosed with Klippel-Feil Syndrome (KFS) and Sprengels Deformity (SD) at two and a half years old. KFS is mainly charcicterized by congenital fusion of the vertebrae in the cervical spine. Other symptoms can include missing a kidney or horseshoe shaped kidneys, heart and lung issues,short webbed neck, low hairline and chronic pain. Kam is congenitally fused on his spine from C4 to C6. SD affects the shoulders, there is an omnivertebrae (extra bone) that connects the shoulder blade to the spine. This causes the shoulder blades to be pulled up high and to not work properly. Most people only have SD on one side, Kamden has it bilaterally. The doctors at Primary Children’s hospital, in Salt Lake City, thought he had Chiari Malformation (CM) and wanted another CT scan to confirm and see how much space he had when moving his head forward and backward. In March of 2018, the neurosurgeon informed Camden’s parents that his first vertebrae was ‘blown out’, meaning it never fused properly and was not supporting his head. After the 2nd CT scan, we were told that his neck was extremely unstable and that 1st vertebrae was ‘exploded’. It was also confirmed that he had Chiari Malformation, which is a herniation of part of the cerebellum through the Magnum Foramen, the hole in the skull for the spinal cord. This hole was causing pressure on the spinal cord and restricting the flow of spinal fluid. The neurosurgeon and the orthopedic surgeon decided it was best to do surgery to fuse his c spine to give him the stability he lacked and protect his spinal cord.

His surgery was scheduled for August 31st. They also decompressed the chiari by removing some of his skull making the hole a little bigger and removing some fibrous cartilage the was constricting the herniated part of his brain. The orthopedic doctor planned to look at his shoulders to see if he could help with the SD. Sometimes the surgery for SD is only cosmetic but he wanted to see if he could help Kamden. During surgery, he decided it would benefit Kamden to have the extra bones removed and move his shoulder blades down into a more natural position. They found that his left shoulder blade was hooked on the top and almost immobilized, which they repaired. Then they pulled his shoulder blades down and reattached them at a more natural location in his back. The Neurologist fused his spine from his skull to c2 on the right and c3 on the left with titanium using the bone removed from his left shoulder as the bone graft (instead of taking a rib). He came out of surgery without any complications. He had both arms in slings and was swathed (ace wrapped from his shoulders to his waist). With a c collar on. He had to have a custom c collar made because of the KFS and having a short neck. He got his wrap and slings off October 16th but the c collar has to stay on until mid December.

The picture above, shows his back before and after his miraculous surgery. On the left, his shoulder blades are almost in his neck, and on the right, they are dropped down to its natural placement.

Kamden is a happy toddler. He loves paw patrol and robots. He wants to be a fireman when he grows up! Kamden may look different, but he is an outstanding little boy whom I call my friend.

It is unfortunate that medical expenses exists, or that children aren’t 100% covered by insurance. However, it is miraculous what the doctors and surgeons can do to improve quality of life for sweet Kamden and many other children.

Thank you for reading! Please follow me on Instagram and Facebook at Sarah Lee Memories or follow the hash tag #tinylittehero to see my other stories.

Tiny Little Heroes is a passion project of mine. It combines my passion for medicine, children and photography! Thank you for all of your support with this nonprofit project. Please comment below or share with someone who needs to read this!

Jaxon

Meet Jaxon, age 15, our Tiny Little Hero diagnosed with coronary artery abnormalities at age 8.

Jaxon is a very active, athletic teenager who has a passion for soccer, and all sports. He loves to run, stay up late and play board games with his family.

When Jaxon was 8 years old, he stayed home from school with a stomach ache. He was watching tv, when he made a comment to his mom, “My heart hurts when I just sit here now.” His mother, Candace, was bewildered by the comment. “What do you mean, now?” Jaxon is not a complainer. He rarely complains about pain, so this concerned his mom. He explained to her that his heart hurt when he ran with his friends, or when he participated in games at school. She asked him about the pain scale, from 1-10, and he said causally, probably an 8, about 5-6 days out of the week. This was shocking news to his mother, so she decided since he was already home from school, they wanted to investigate. They went to his pediatrician that same day. His EKG was normal, but his pediatrician knew Jaxon well, and recommended they go to the Heart Institute.

2 weeks later, the Cardiologist ran some more tests. Jaxon had another normal EKG. The cardiologist suggested growing pains. Jaxon’s mother was furious. Growing pains? In his chest?! She argued with the doctor, as politely as possible, and insisted on more testing. Reluctantly, the cardiologist agreed. They ran an echo cardiogram, three different times. The staff kept coming into the ultrasound room saying, we need a better picture, or hold very still. After the 3rd try, Candace knew they had either found something abnormal, or were looking for something that was missing. Candace was right. The cardiologist came in and explained that Jaxon had a heart defect. Jaxon had an abnormal coronary artery. Normally, when the Aortic valves close, it is supposed to force blood into coronary arteries to oxygenate the heart. However, the pressure of his aorta would pinch off the blood supply because his coronary artery had grown inside his aorta, when it should be on the outside.

The next step was a stress test. That was also normal. The cardiologist who wanted to operate, suggested a Medical discussion on a panel of doctors to decide how to proceed, which concluded to open heart surgery. At age 8, Jaxon was declared to have only 5-10 years to live without the open heart surgery. Luckily, in Denver, Colorado, Jaxon was able to have one of the top pediatric surgeons in the nation.

Diagram credit to Hopkins Medical http://www.hopkinsmedicine.org

Surgery was an open heart surgery, called an unroofing procedure, in the aorta. Right coronary artery comes off the left side of the heart. Jaxon’s heart is still slightly different than normal, but functions as it should.

Prior to the surgery, Jaxon remembers getting tired really easily, not being able to keep up with his energetic friends. He remembers his heart hurting. He recalls the surgery being so painful, but he says it was worth it. “I wouldn’t be here without it!” He exclaimed.

Jaxon’s mother is a great advocate and asset for Jaxon! Luckily she had that knowledge and motherly instincts to pursue the cardiologist for further testing. This is a similar condition to those young athletes who drop dead in the heat of a game. Heart defects often go undiscovered, and can be detrimental. She recounts how she was devastated during an update during the surgery, when the nurse told her everything went well, they just have to start his heart. Time froze for Candace, when she realized her son was lying on the table, with his heart stopped. This whole thing unfolded in less than a month, from diagnosis to surgery.

Jaxon’s mother highly recommends doing a hospital walk through before any procedure like this. She had a hospital staff member strongly suggest it, saying seeing your child like that will be so much harder if it is not familiar. Candace walked around the cardiac ICU, and witnessed several children with tubes, IV’s, etc so she came to know what to expect.

Jaxon says he loves to tell his younger cousins that his scar, which is 12 inches long, is from battling a lion!

Jaxon is now a sophomore in high school who aspires to be an engineer. Jaxon is talented at soccer. He is not limited in sports, and is not treated differently for his health history, by his coach or anyone.

Thank you for reading! Please follow me on Instagram and Facebook at Sarah Lee Memories or follow the hash tag #tinylittehero to see my other stories.

Tiny Little Heroes is a passion project of mine. It combines my passion for medicine, children and photography! Thank you for all of your support with this nonprofit project. Please comment below or share with someone who needs to read this!

Camden

Meet Camden, age 6, our Tiny Little Hero with Autism.

Autism, or Autism Spectrum Disorder (ASD) is not characterized by the same characteristics. It is often categorized as inability to maintain eye contact or a really smart boy who is socially awkward.

While these are not misguided, they are definitely generalizations of Autism. It has been recently discovered that Autism has a spectrum. What this means, is that each person with autism can have their own unique strengths and challenges.

Camden’s strengths are his amazing basketball skills, and his appealing charm. Camden often scores the most points on his team. It is rare for anyone on the spectrum to play sports, but that does not mean that he physically can’t. It’s just harder to play on a team sport, like basketball, when you lack social cues such as presented with autism, but it can be done!

Camden’s mother says he has a hard time acknowledging that he is different. Things that Camden’s parents, and others noticed first, were motor skills such as crawling or speech were delayed, but it was more obvious with his academics. His mother noticed that for reading, he was memorizing books, rather than actually reading the words. He also has a hard time with social concepts like introducing yourself, saying hi, or remembering his friends names, all of which are expected of a child his age. Another trait of autism, is having a hard time picking up on sarcasm, taking everything literally.

According to Autism Speaks, a combination of genetic and environmental factors influence the development of autism, and autism often is accompanied by medical issues such as:

  • Gastrointestinal (GI) disorders
  • Seizures
  • Sleep disturbances

Autism affects an estimated 1 in 59 children.

Symptoms include:

By 6 months

  • Few or no big smiles or other warm, joyful and engaging expressions.
  • Limited or no eye contact.

By 9 months

  • Little or no back-and-forth sharing of sounds, smiles or other facial expressions

By 12 months

  • Little or no babbling
  • Little or no back-and-forth gestures such as pointing, showing, reaching or waving
  • Little or no response to name.

By 16 months

  • Very few or no words.

By 24 months

  • Very few or no meaningful, two-word phrases (not including imitating or repeating)

At any age

  • Loss of previously acquired speech, babbling or social skills
  • Avoidance of eye contact
  • Persistent preference for solitude
  • Difficulty understanding other people’s feelings
  • Delayed language development
  • Persistent repetition of words or phrases (echolalia)
  • Resistance to minor changes in routine or surroundings
  • Restricted interests
  • Repetitive behaviors (flapping, rocking, spinning, etc.)
  • Unusual and intense reactions to sounds, smells, tastes, textures, lights and/or colors

Many children with autism also experience sensory disorders, like touch, sounds, or other sensations.

Camden is a charming 6 years old, who has a unique set of challenges. He is still able to play sports, he makes eye contact, and he has autism. Autism is called a spectrum for a reason, and we should not judge someone’s ability based on a categorical word, but rather on an individual basis.

On a personal note,

I highly recommend using www.autismspeaks.org as a tremendous resource or for more information regarding IEP, (Individualized Education Program) This is a link for the IEP booklet created by the Utah Parent Center to help those who need it.

https://utahparentcenter.org/wp-content/uploads/2015/10/Parents-as-Partners-in-the-IEP-Process-Handbook1.pdf

IEPs are specialized meetings in which the student’s teacher, such as Camden’s teacher, a parent, and a special education teacher or counselor, all sit together and review goals, achievements and progress needed for Camden to succeed. Such as reading levels, or even social progress. It is much like a parent teacher conference but much more individualized and frequent.

As someone who participated in IEP’s during my childhood, and I cannot emphasize the importance of having an advocate or very knowledgeable parent involved. This information can be overwhelming to take on. Please utilize resources provided by public education or ask your pediatrician for help to learn how to best aid your child’s education. I would not have been able to graduate and go to college, without my incredible mother and a trained speech pathologist (for my hearing loss) to help me set goals, and make sure I was the priority and wasn’t lost in my own education planning, which can happen!

Thank you for reading! Please follow me on Instagram at Sarah Lee Memories or follow the hash tag #tinylittehero to see my other stories.

Tiny Little Heroes is a passion project of mine. It combines my passion for medicine, children and photography! Please comment below or share with someone who needs to read this!

Hanley

Meet Hanley, age 9, our Tiny Little Hero with Alopecia.

At age 5, Hanley lost all of her hair. Her mother, with a hand full of hair, sobbed. With her background as a hairdresser, she had some insight as to what was causing this. A few months after the initial hair loss, Hanley grew her hair back to chin length. When Hanley was in first grade, she lost it all again, with no hair growing back this time.

Hanley is now age 9, and she says she is the lucky one! She laughed as she told me she doesn’t have to comb her nasty, gnarly, tangled hair like her sisters do. She even nicknames her hair patch, Fuzzbert.

Although there is little to no evidence about Alopecia being genetic, there are definitely cases of multiple siblings or parent and siblings both with Alopecia.

Meet Paislee, age 7.

Paislee is Hanley’s little sister, who has a bald patch on the bottom of her scalp. It arrived about a year ago and has seemed pretty permanent thus far. It is unknown at this time whether Paislee will lose more hair, or grow her hair back. Alopecia is very unpredictable.

Alopecia is an autoimmune disease, which means that the body’s immune system attacks the body. When alopecia develops, the body attacks its own hair follicles. A person’s genetic makeup, combined with other factors, triggers this form of hair loss. The immune system may not be the only cause of alopecia. The National Alopecia Areata Foundation says “Alopecia areata can run in families. But, unlike many inherited conditions, both parents must contribute specific genes to pass alopecia areata on to their children.”

There are 3 types of Alopecia. Alopecia Areata, Alopecia capitis totalis, and Alopecia Universalis. All 3 forms are demonstrated in this photo. In order from left to right, Alison, has Alopecia Universalis, meaning universal hair loss including facial hair like her eyebrows. It may be patchy as in a condition called alopecia Areata, which is what Paislee has. Hanley has Alopecia capitis totalis, which is total scalp, with possible patches.

Hanley and Paislee met their friend, Alison, at an Alopecia conference held every year by the NAAF. It helps the sisters feel included, excepted and understanding their unique conditions. Their friend introduced them to her business, Coming Up Rosie’s, which makes fun and unique head covers.

This is a design drawn by Hanley and then created into her cap, a fun unique way of expressing herself. Hanley has several fun hats and beanies because her mother learned how to crochet. She has a pineapple, long princess braid like Queen Elsa, or several other fun unique styles.

Hanley truly does not miss having hair! She is a radiant example of being true to yourself and choosing to be optimistic! She glows with confidence and she helps so many learn to be confident with who they are, no matter what!

Help us spread awareness! Share this story, tag a friend below who needs to read this! Follow my blog at gigisdiaries.wordpress.com and Sarah Lee Memories on Facebook and Instagram for more inspiration and adoration for our Tiny Little Heroes!

Tiny Little Heroes is a passion project of mine. It combines my passion for medicine, children and photography! Please comment below or share with someone who needs to read this!