To know Mattie is to love her. She has a sweet yet stubborn disposition, is full of sass, and is always eager to help others. Her personality emanates determination, a fierce independence, and a stubbornness that can be challenging at times to her mom!
Mattie radiates joy, affection for others, curiosity, and a love of learning. She learned to snap her fingers at people to get what she wanted before she was able to speak. Despite her challenges, she has always found ways to let people know what she is thinking . . . and in doing so she has won the hearts of many with her precious personality.
Mattie was born with a rare chromosomal disorder called tetrasomy 9p mosaicism. Simply put, that means the short arm of chromosome 9 appears 4 times instead of 2. This disorder is reported to affect more than 60% of her cells. It is responsible for causing gross motor delays, borderline intellectual functioning, significant developmental delays, neurological learning disorders, a neurological speech disorder called Apraxia, extra fluid in the ventricles of the brain and thinning of the myelin sheath, as well as being severely nearsighted, having low muscle tone, hearing difficulties, and having chronic ear infections. It is a spectrum disorder so symptoms, as well as prognosis, greatly vary. Treatment includes continued monitoring of the health issues as well as aggressive therapies (occupational, physical, academic, and speech).
A child such as Mattie requires a large support system and “village” to provide for her healthcare and social educational needs. Mattie has received treatment with various departments at Arkansas Children’s Hospital – including neurology, genetics, ENT, audiology, dental, orthodontia, optometry, general surgery, dermatology, and the sleep clinic. She has “grown up” having surgeries, repeated MRIs, EEG, EKG, CT scan, and various other medical testing and procedures.
Mattie has also attended Access Academy and Access Preschool for the past 9 years and has been a recipient of the Succeed Scholarship for the past 3 years. This school and scholarship program have been an absolute blessing to our family. Mattie has been loved and cared for by the Access community since she was 2 years old. Her progress has been nothing short of extraordinary. Mattie took her first steps when she was almost 2 years old – only after months and months of physical therapy. When she was 2 and a half she spoke less than 20 words. In the past year alone she has learned to ride a bike without training wheels and do a cartwheel! She is just beginning to learn to read and loves anything related to art – painting, drawing, and crafts. She represented Access as a cheerleader this past year and had so much joy trying out for the talent show and participating in the character assemblies. When I think back to what Mattie’s life might be like without the care and resources that Access provides, it moves me to tears. And Mattie’s enrollment at Access is only made possible because of the Succeed Scholarship.
Having a school environment that treats the whole child – one that provides her with the special education that she requires but also the social skills training, vocational training, disability awareness, not to mention the hours and hours per week of medically necessary therapies that she must have in order to grow and thrive in the world – is invaluable for children like Mattie. When I think back to what her life might be like without the care and resources that the Succeed Scholarship affords her, it moves me to tears. Because I know that it is because of this program that she has been able to progress in the manner that she has. I know that it is because of this program that she will grow to be a functioning member of society. I know that it is because of this program that she will be able to reach her full potential in life – whatever that may be.
As Mattie’s mother, my expectations for her future have gone through a roller coaster of change since learning of her diagnosis. But having the knowledge that this incredible resource exists right at our fingertips gives me so much hope for her life. I cannot sing its praises enough. When it comes to the health and wellbeing of my daughter – I know that the Succeed Scholarship has made a huge impact for her. It has given her a chance to live and thrive.
Please know what a needed resource the Succeed Scholarship is to so many children like Mattie. Please know that losing this scholarship program will have a severely negative impact on so many precious lives. Thank you for your time in reading our personal account of the Succeed Scholarship’s importance to us. And thank you for your commitment to serving the children of our state.
– Erin, parent