Joe and Mikayla D.
Condition: Schizencephaly, Periventricular Leukomalacia, Epilepsy, Cerebral Palsy
City, State: Indianapolis, IN
Club: William McKinley School 39 Sparrow Club Service Hours:
Date Adopted: 1/09/2015
Joseph is an extraordinary little boy with a brilliant smile. He is energetic and loves to be on the move. Some of his favorite things include cars, guitars, books, sports, and snakes. He has a magnetic personality and wonderful sense of humor. Joseph also has multiple disabilities including Schizencephaly, Periventricular Leukomalacia, Epilepsy, and Cerebral Palsy just to name a few.
These disorders have caused many complications in Joseph's life but through it all he has maintained a smile and joy like no other. Joseph uses a wheelchair, requires complete hand over hand assistance for all tasks, ans is nonverbal. While he can move his limbs he has no functional use of them therefore making things much more difficult. He cannot point to an item to indicate he wants something but this has not stopped him from communicating. He has developed a yes/no expression, can make some choices by using eye gaze to pick an object, and is practicing using an iPad that has switches hooked up to it so he can move his head to one side once the app scans onto item he wants. Joseph receives his medial care primarily through Peyton Manning Children's Hospital where a team of specialists work diligently to keep him healthy & thriving.
Regardless of Joe's challenges he has remained active and has insisted on being seen as an equal. Most recently he was an active member of Boy Scouts of America which he loved. He has also played baseball with a challenger league and played challenger football at Lucas Oil Stadium. For several years he enjoyed painting and his work was showcased at the Governors Residence during the Holiday Home Show as well as at an art gallery in Noblesville. Joe is in the 4th grade and fully integrated into a general education classroom with the help of a one on one aid. Joseph has many friends and enjoys school.
He is like many 10 year old boys in many ways. He enjoys riding his bike, going to football games with his dad, playing video games, and helping his dad with any and all projects around the house. He also loves anything that makes his mom squirm, like snakes and bugs.
Joe has a very close bond with his sister, Mikayla.
Mikayla was born two months premature weighing in at 1 pound, 15 ounces. During her 49 day stay in the neonatal ICU, the doctors referred to her as their super star. Given her gestational age and size, Mikayla required very little assistance to breathe and thrive. An ultrasound was done on her brain solely because of her brother's medical history. It was during that Ultrasound that doctors discovered he also had Periventricular Leukomalacia. This prompted an MRI of her brain and it was found that she has a different rare neurological disorder called Porencephaly. She also has Epilepsy.
Mikayla immediately began receiving therapy services. It became apparent that the left side of her body was more affected than her right. She has significant difficulty using her left hand, but makes up for it because she is fabulous with her right! Mikayla is able to sit independently, crawl, and cruise around furniture. She can walk with the assistance of an adult. She has a pediatric walker which she can use very well with all the supports attached, but she is progressing past the supports. She is able to say a few words and uses some sign language to communicate.
Mikayla began having seizures when she was six months old. Like her brother, she requires emergency medication to be administered to get the seizure to stop.
Mikayla is feisty and determined. She is very independent and will not give up on a task because it is too hard. She is the master at figuring out how to make her body work for her! She is like many four year old girls in that she loves to play dress up, have tea parties, and listen to music.
Joe and Mikayla have been faced with many challenges that will continue throughout their lifetime. They handle these challenges with a grace and determination that is awe inspiring. Their parents are proud beyond measure and work diligently to ensure they are afforded every opportunity to be as healthy, happy, and independent as possible.
Sparrow Cash raised by the students at William McKinley School 39 will help pay for a wheel chair accessible van.