Susan Ramirez is the lucky mom of Bella age 13 (very typical!), and Marco age 9 (not so typical!). Marco is a happy and active 9 year old who was diagnosed with Autism and ADHD at age 3. He is a joy to be around and continues to amaze us and make our family laugh every day!
I am Chris Newlon, older mom to 5, ages 27-11. Rebecca, the 11 yr old, has DS, repaired AV canal defect and duodenal atresia and an overload of love. I found out prenatally and almost lost it for good. Relied on husband, a few amazing friends and the need to be there for my other kids to get through the shock. I look back and know it was a path I had to go through. I am on the board of the McHenry Co. GiGI's Playhouse, a community speaker for NADS, ex-LLLI leader and retired OT. So glad to be a part of this great group.
My name is Kathleen, I am a mom of 3 beautiful daughters, our middle daughter Kiley lives, and thrives daily with moderate (sometimes non-verbal) Autism, minor Cerebral Palsy, and Intractable Severe Epilepsy! As mom and daughter, we have followed Kiley's strengths and interests to begin leading a pretty successful, and adventurous life! We enjoy running together (Kiley, just finished her first Half Marathon), the outdoors, biking, hiking, kayaking, etc. Not only does Kiley hold down a job in a local hair salon, but we have begun our own photography business (following Kiley's interests)...Curlygrace Photography (we have a page on FB) and will soon be headed in a new direction with some of our painted props and creations for your home! It has not been an easy journey...but it has been a journey we wouldn't trade for anything! Autism is not who she is anymore...but in fact...just one amazing part of her personality!
This is Myra Faith Cacini born 11/7/11. Diagnosed shortly after birth with Down Syndrome and a complete AV canal repaired surgically at about 4 months of age. Myra has 5 older siblings ages 20, 17, 15, 11 and 4. Our 11 year old son had AML (leukemia) at age 2 and was diagnosed this past year with Type 1 diabetes. Myra's diagnosis was a surprise and frankly a shock to me especially. She is such a blessing to me and our family. Feel I learn more from her than I could ever teach her! ~ Amy Cacini
Margie Gallagher, mother of four. All my children are perfectly imperfect. Molly has Ds and is six years old. She is sweet, sassy and stubborn! She has taught our family and this community, Beverly, the meaning of Unconditional Love!
Andrea Vaughn, mother of two year old Griffynn and 10 month old Cayden, who was diagnosed with down syndrome and Hirschsprung's disease after birth. I'm happy to help in any way possible, and look forward to being a resource for those who are feeling as lost as I was in the beginning. It's overwhelming, but the most rewarding life I can imagine.
Lizette Vasquez, mommy to Lucas who is 3 years old. Lucas was born with Down syndrome, had full AV Canal Repair at 3 months and diagnosed with both tracheamalacia and bronchomalacia. I had a prenatal diagnosis at 18 weeks of pregnancy and have since then been advocating for inclusion, acceptance and helping educate communities on how Individuals with Down syndrome are more alike than different.
Margie Reid Doyle ~ Mother of 5 children and youngest son Colin, 6 years old, has Down syndrome. Advocating the research to improve cognition and prevent early onset Alzheimer' disease in Down syndrome as Member of Board of Directors of LuMind Foundation www.lumindfoundation.org
Our Amazing Group of Mentors
The day her son Nathaniel was born with Down Syndrome, Holly began the celebration. In nine short years, her vision has taken root as she helps others see and celebrate the world’s special children. A mother of 5, Holly proudly shouts "I am who I am” and invites others to join her in making a difference for all children who are unfortunately judged for being different.
Please contact Holly directly at email@example.com
Grace has been promoting and writing about Holly Simon’s HollyDays events for years. Not only is she an advocate for children that are special, but she is a mom who has been met with several challenges along the way. She works tirelessly to send the message through her writing. A professional journalist and freelance writer, Grace is editor of The Villager for the Beverly Area Planning Association and oversees marketing and literary arts programming for the Beverly Arts Center of Chicago. She is a member of the WBEZ Community Advisory Board.
Genie is the mother of 2 amazing girls. Genie and her entire family are very involved with the theater. She donates much of her free time working with the productions and the entire ensemble. Genie is an adoption attorney, at her own law firm. She has worked very closely with the adoptions of special needs children. Genie feels the need to Celebrate each and every child and explore their many unique talents.
Michele Kovack, mom to Cortney Kovack, 19 years old. She appeared to be a healthy baby girl when she was born. But at a few months old we noticed she was very floppy and was not focusing on anything. Her eye doctor told us she had cortical blindness. That was the first blow that we had to endure. After getting over that and thinking, "Okay being blind is not the end of things....we can do this! We enrolled ourselves in the Hadley School for the blind and read everything we could to help her. Months went by and she still couldn't hold her head up. She always seemed to be leaning to the side. We went to a neurologist at 6 mos who told us to get her in therapy. She was "developmentally delayed." She was our first child so we had no one to compare her to. But in our hearts we knew something was wrong. We went to numerous geneticists. The thought she might have a mitochondrial defect but every test showed nothing. Those first few years of her life are a bit of a blur. It was extremely tough not knowing what was wrong with our beautiful baby girl. Then around the age of 1 she had her first seizure. Yep, she had epilepsy. So now she was a bunch of different symptoms with no diagnosis. They just used the terms, "developmentally delayed." Around the age of 4 or so, they gave her the diagnosis of Cerebral Palsy. Not because they truly felt she had that but because they needed a label for insurance purposes. And she certainly had many signs of CP. The problem was that there was no trauma at birth. Some of the docs still think it could be genetic. We just don't know. Around the age of 15 we pursued another geneticist in hopes that with new technology, we might get the answer we were looking for. Unfortunately the tests showed nothing. It was heart breaking. Maybe it shouldn't matter, but to me it did. So now that the wounds aren't as raw, we describe Cort as unique. Special. And that she is. She is mentally and physically disabled. She has a seizure disorder, and is cortically blind. And yet, this crazy Mama has tried desperately to pursue a modeling career for her. (I can be a bit off my rocker!) Many have asked why. My daughter is so very limited in what she is able to do. But modeling. Smiling in front of the camera.....that she was a natural at. It has made me feel like we have a little bit of a tighter bond because we can share this together. And don't get me wrong, my girl does lots of other things with us. We travel with her. She is in choir, two cheer leading teams. She is included in EVERYTHING we do. But as a mom, I missed having that "typical" mom and daughter "thing." Shopping for pretty clothes etc....so this became our thing. ( I only have one other son...17 who is also a great kid!) I appreciate the opportunity to tell Cortney's story. Thank you for letting me long winded. I often wonder what kind of people we would have been if she was someone else. Certainly not as patient, empathetic, understanding, flexible....and we wouldn't have met the people we have. So like many of you have stated, she has taught us much. She is a beautiful soul.
Carla Fanelli Dobrovits - Mom of 10, including our sweet Henry with Larsen's Syndrome (adopted from Ukraine) who went to heaven in November 2012 - Member of the Board of Directors of Reece's Rainbow, a grant foundation advocating for international special needs adoption - www.reecesrainbow.org
Kathleen McShane, MA, LCPC is a therapist who has worked with children and families of children with special needs for almost 15 years. She also has a special interest in medical trauma. Kathleen's office is located at 10540 S Western Ave, Suite 506, Chicago. She can be reached by email firstname.lastname@example.org or phone 312-315-5210
I Am Who I Am - Get To Know ME!
My name is Tiffany, my daughter Adalynn was born with transverse Symbrachydactyly of her right arm! It was a shock to us, but we have embraced her beautiful limb difference! We call it her "lucky fin" just like Nemo!
Julie A Martin, Child : Joshua Martin - Age 4 Diagnosis: Down Syndrome Mother of 3 boys - Jason age 25 & Justin 23 first marriage, Joshua age 4 DS - second marriage Stepmom to 2 - Colton 21 and Jaylynn 15 I was 6 days shy of 40 when I gave birth to Joshua. We received the diagnosis at birth. Was a huge surprise, and handled with love! Our hospital experience was AMAZING and so helpful and informative. From what I here from others, that is not always the case. I believe Joshua is truly a gift from God, and I am so blessed to be chosen for his mom! He is the sunshine to my every day! I am advocating for inclusion, acceptance and awareness. Based on 4 1/2 years of experience, there is so much I have learned and would love to share with others.
Beth Kazmierczak. Mother of Ben and Nora. Nora is 6 months old and has down syndrome and symbrachydactyly in her right hand. Advocating for a more positive diagnosis experience and better educating medical staff regarding delivering a diagnosis of DS.
I Am Who I Am
My name is Alexandra Gory. My husband Michael and I have three boys. Our middle child, Gavin, was born in 2007 and diagnosed with Down syndrome. He is a fun loving, soon to be eight year old. And never lets anyone tell him he can't!
She is 2 1/2 and born on June 28, 2012. She is little sister to Aubrey, 5, and makes me and Scott very proud parents!! We were at a 3% chance of DS and opted not to do an amnio. We tried to prepare but i think it was very difficult to do. It made for a sleepless pregnancy but the reward in the end was worth it. Emma has had quite a year being featured in the DAILY HERALD twice, the Tribune once, and on the cover of the UPs for DownS calendar this year! She is simply put, awesome! Her big sis is her biggest advocate and best therapist! We wouldn't change this journey for anything in the world!
This is Emma!