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This fundraiser ended on 04/27/13

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We are dedicated to funding the KEYS to UNLOCK the VOICES of Children with Childhood Apraxia of Speech.

For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. -Jeremiah 29:11 Our Journey continues and only one person knows how the story ends…… 14 months, 686 hours of therapy, 260 speech sessions, 78 OT visits, 74 ABA sessions, and 170 days of school since our daughter was first diagnosed with Childhood Apraxia of Speech (CAS). CAS is a neurological speech disorder that causes children to have difficulty with the motor planning, sequencing and programming necessary to produce volitional speech. CAS is a rare speech delay affecting approximately 1% of children. Our Journey began last July when we traveled from Iowa to Arizona with our 3 year old daughter in search for her voice. After a 3 hour evaluation and waiting 2 weeks for answers, we received 3 words that changed our life...Childhood Apraxia of Speech. CAS is a very challenging speech disorder that requires intense, skilled speech therapy. Children with CAS require speech therapy 4-5 days a week coupled with other therapies and interventions. Addy and her wonderful and caring Nana began traveling back and forth to Arizona for Speech and Occupational therapy every two weeks. Progress began immediately when Addy received proper intervention. Our family knew that Addy needed to be in Arizona to receive therapy everyday. Thanks to amazing parents and 2 very generous family members I was able to quit my job and move to Arizona with our 2 daughters and their Nana. Without my mother I would not be able to do this alone. My husband and father continue to live and work in Iowa. My husband flies to see us every 2 weeks with the support of many family member’s flier miles. For all of the love and support our family has given us we cannot thank you enough. Without all of your supports Addy’s Journey and therapies would not be possible. From the prairie to the desert….and trusting God that we are exactly where we are meant to be. As I reflect on the last 14 months I am reminded of where we began. Addy had no words and very few sounds when she was diagnosed. The fears of the unknown were numerous. Would she ever be able to say “I love you?” Would she ever be able to tell us what hurts, have friends, be understood by others? Would she be able to tell us what she wants or what she did at school and would others accept her? Although our journey with apraxia is still long, I have hope with how far we have traveled. Addy can say “I love you.” She tells us what hurts; others generally understand her and almost always by us; she can voice what she wants and she plays with friends at school. Addy is beginning to tell us what she does at school. She is the happiest, most lovable kid and yes she is loved and accepted by so many people. We have climbed over mountains (both figuratively and literally) and jumped over hurdles and will continue this marathon of apraxia. Addy, like so many other children with CAS, also has Sensory Processing Disorder and Gross and Fine motor Apraxia. These challenges grossly affect all areas of development. I am dedicated to finding the right therapies, early intervention, and programs to meet all of Addy’s needs and hope to be able to help other families who are on the same journey. It definitely takes a village to help children with CAS. Currently, Addy is in preschool 3 days a week, speech preschool 2 days a week, speech therapy 5 days a week, Occupational therapy 2 days a week and ABA therapy 10 hours a week. That’s a total of 35 hours of school and therapy a week. She is a 4 year old with a full time job and her coworkers include 7 speech therapist, 1special education teacher, 2 preschool teachers, 3 ABA therapists, 1 OT and lots of friends and family. TEAM Adalynn Kay Tinkle (A.K.T.)……Addy Kan Talk As well as a village, it also takes lots of financial resources to help children with CAS. Therapy is very intense and is not often covered or covered well by insurance. Families are getting capped on speech therapy visits or denied speech all together. OT visits are also being capped and ABA is very hard to get covered. As I meet and speak with other families the story is the same. The financial struggles of covering therapies are great and insurance is denying more and more therapy visits. Families continue to appeal and fight with insurance companies for coverage with little to no success. Early intervention and intense therapy is the only cure for CAS. These kids don’t have time to wait they need therapy now. The sooner therapy is started the better the outcome, and more voices are unlocked. We are starting a fundraising page through giving forward. Our hope is to begin raising money to help families with CAS get the therapies, programs and tools they need to unlock the voices of their children. Do not feel obligated to give, I know that we all have a “story” and your journey might be compelling you to another cause that is changing lives. If you find it in your heart to give, thank you, your donations will help families on their journey. What we do ask is your support through prayer because we don’t make things happen. HE does, HE makes all things possible. For I am full of words, And the spirit within me compels me. -Job 32:18
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