Kinsley S.
Hawaii
7 Years Old
Diagnosis: Drug Resistant Epilepsy
Theme - Lilo & Stitch, Ohana means Family
Favorite Colors: Blue
Due Date: February 15, 2025
Kinsley's Journey
Aloha. Our daughter's name is Kinsley. She's 7, our youngest of 4. We adopted all of our kids almost 2 years ago. (Fostered prior to adoption for 5 years.)
Kinsley began showing signs of developmental delays as early as 10 months and we got her help through Easter Seals Early Intervention. She received services (speech, OT, PT) till she aged out at 3 years old. On her 3rd birthday she was supposed to start D.O.E Special Ed preschool but that is the very day the state of Hawaii school system shut down for Covid.
While home with only me teaching her, the school decided that without ever seeing her that she no longer needed her IEP (Individualized Education Program) and stripped her of it. We fought for 3 more years to get her services back.
About 3 years ago she was diagnosed with epilepsy. We started noticing strange eye movement and she was getting headaches a lot so we reached out to her doctor, but in Hawaii we have a shortage of pediatric neurologists so it took some time to get a doctor to see us. Once we did they did testing and she was diagnosed with epilepsy.
For over 2 years we tried and tried to get her seizures under control but no matter what we tried they continued. While trying to figure out the cause she underwent genetic testing where she was diagnosed with PTEN Hamartoma Tumor Syndrome. An extremely rare genetic disorder. (Less than 50,000 people worldwide.)
This past April her epilepsy diagnosis was changed to "drug resistant epilepsy" which requires brain surgery.
There are 4 phases to this and we are currently in California admitted to Stanford Children's Hospital. Checked in on 8/7 and our stay doesn't yet have an end date.
For each of these phases we will need to travel back to California as Hawaii doesn't have many pediatric neurologists and no pediatric neurosurgeons.
Below is a list of patterns that have been chosen for this quilt.
Please check this list for duplications before signing up.
Link to sign-up form is at the bottom of the list.
Accepting 12 signups
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1. Sandra P - MA - https://www.etsy.com/listing/1396805021/lilo-and-stitch-aloha-cross-stitch?click_key=ab03483654478788116b3cad292dec0920fa9733%3A1396805021&click_sum=d51f2469&ref=shop_home_recs_20&pro=1&sts=1
Lilo and Stitch shoulder to shoulder, Stitch playing ukelele
Lilo and Stitch shoulder to shoulder, Stitch playing ukelele2. Sandy S - MO - Laughing Stitch (free pattern found on Pinterest)Stitch laughing and looking straight ahead.
Stitch laughing and looking straight ahead.3. Mary Ann M. - MO - https://www.etsy.com/listing/659841036 Stitch wearing a hawaiian shirt with flowers on head
Stitch wearing a hawaiian shirt with flowers on head4. Rhonda M - AK - Lilo & StitchLilo & Stitch back to back with floral front
Lilo & Stitch back to back with floral front5. Becky L - UT - Lilo and Stitch AlohaLilo in red with blue stitch back to backhttps://www.etsy.com/listing/1382785864
Lilo in red with blue stitch back to backhttps://www.etsy.com/listing/13827858646. Linda C - KY - Ohana means familyhttps://www.etsy.com/listing/1053894542/lilo-and-stitch-ohana-cross-stitch?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=ohana+means+family+cross+stitch+pattern&ref=sr_gallery-1-12&dd=1&content_source=c2bc87a704549569fcc743f9351cb982535d6767%253A1053894542&organic_search_click=1
https://www.etsy.com/listing/1053894542/lilo-and-stitch-ohana-cross-stitch?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=ohana+means+family+cross+stitch+pattern&ref=sr_gallery-1-12&dd=1&content_source=c2bc87a704549569fcc743f9351cb982535d6767%253A1053894542&organic_search_click=17.
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