Zigglebee: A children’s Book That Was Created To Encourage Engagement Through Creativity And Art

By: Thembisile Mabodoko Zigglebee

We’re incredibly inspired by young writer Lana Bailey who is the author of Zigglebee , a kid's book that features 5 FUN stories inside: Story 1: A Visit from the Tooth Fairy Story 2: My Teddy Bear is Alive Story 3: When the Tornado Came Story 4: My Teacher’s New Sports Car Story 5: My First Banana Split Sundae About the author: Lana, only 7 years old created the book with inspiration from her twin sister Laila who suffers from a condition called Jacobsen Syndrome. Their mother, Shari Bailey, has been a big part of this book and hopes that it encourages others. Learn a few facts about the awesome book below!

Jacobsen Syndrome

Not many people are aware of Jacobsen syndrome. In broken terms, Jacobsen Syndrome is a congenital condition caused by the deletion of several genes in chromosome 11. This condition is scarce; it occurs in only 1 in 100,000 newborns. Jacobsen syndrome is significantly associated with autism and can result in many serious health complications.

Laila's Story

Laila was born in 2014, and at the time, she was 1 in less than 100 cases confirmed around the globe with Jacobsen syndrome. Due to the condition's rarity at the time, there were few studies or research on it. With the many serious health complications this condition comes with, it was stated that roughly 20%- 25% of all infants with the syndrome pass away before the age of 2. Laila is truly a miracle child to have made it to the amazing age of 7. Laila has difficulties with basic day to functions, such as being nonvocal, so her friends and family had to learn ways to communicate with her. Lana found just the perfect way to do that with Zigglebee.

Zigglebee

Lana normally went to school, but due to Covid-19 and the lockdown in 2020, she had to stay home and find ways to entertain herself throughout the day aside from outdoor fun and watching tv. Lana is very creative and loves writing stories. She grabbed a crayon and paper and just started freely writing a story. Before she two could doodle the pictures that went with the words, Laila her special needs sister, started doodling and coloring on the pages. Any other child would be distraught to see their sibling doodling all over their work, but Lana was so excited to see how happy Laila was when she was doodling. She immediately went to show her mother, Shari Bailey, what her sister was doing. They both just sat there so much excitement to see that Laila was communicating with Lana through the stories Lana had written. And this was the beginning of Zigglebee. They immediately started creating the book, which officially came to life in 2021. The book is a clever way of encouraging engagement through creativity and the arts. This book is a testament that art is a universal way to communicate and motivate creative thinking no matter what challenges we face in life.

Lana

Lana says that one of her favorite ways to communicate with her special needs sister Laila is through body language. One day Lana and her mom Shari wanted to inspire Laila to start drawing, so what better way than to start their own game? Shari and Lana started a game of charades where they created different shapes with their bodies and made noises. They had fun while giggling and noticed that Laila seemed to enjoy the game while watching. Lana says she has many plans for the cookbook's future. The next book will either be a Christmas or Halloween-themed story. She wants to continue creating stories about different holidays and maybe even places.

Words from Shari

Since Laila was born, the journey has not been easy. "Laila has faced many adversities such as several significant surgeries, extreme healthcare needs, and constant specialized care." Laila'sLaila's emotional health has also taken a big toll. She isolates herself in many settings and has faced public bullying from people and many social disadvantages due to her being non-verbal. Despite everything she has been through, Laila shines through with her smile and lives every day happy and able to maintain what she can. Shari says her daughter Laila "exudes optimism, cheerfulness, and an overall angelic-like spirit, which is why we call her a ''gift''. Because of this, each birthday is truly a milestone". In words, only a mother who has been through it, Shari has given some great words of wisdom to parents and friends of people suffering from Jacobsen Syndrome. Being a special needs parent exposes strengths inside you that you never knew you had, sheds layers of tough skin you never knew you could lose, and introduces you to many emotions you never knew laid dormant inside your soul. Know that you are not alone for anyone dealing with the challenges of being a special needs parent. There are harder days than easy ones, but knowing your special angel relies on you the most to survive and smile is much pressure.

However, each day that passes should become a testimony to your willpower, strength, and ability to overcome this special task've been assigned in life. Because of the necessary support special needs families need, I established a non-profit called Laila'sLaila's Gift this year. Laila'sLaila's Gift will shed light on the challenges of being a special needs parent and family member and promote inclusion by highlighting the blessing each special needs child brings to the people they encounter. Along with the support and resources, Laila'sLaila's Gift offers to the community and parents; our three mission is to celebrate the life of each special needs child, especially knowing the challenges they face leading up to each birthday year-over-year. Not only is tomorrow not promised, but primarily because each year, they face many ups and downs and personal difficulties that slowly chip away at their mental being.

Laila's Gift appreciates each child's perseverance and determination to overcome these hardships. We commend their courage, tenacity, and unique ''gift''; therefore, we celebrate them. Our goal is to raise at least $100,000 by December 31, 2022, so we can solicit names and locations of at least 100 special needs children to celebrate birthdays starting January 2023! The more we raise, the more beautiful children we can celebrate. The gifts will be custom to the child's liking, and each child will be featured on our website, along with their story and how they were celebrated. Donations are fully tax-deductible and will go towards a fantastic cause.

To donate or learn more, visit www.lailasgift.com