Board and Staff

Board Members
Regional Group Admins
Pinterest Admins
Bloggers

Anita

Website

Founder


Anita : Founder

Anita is a stay at home mom of her miracle. Her experience includes a previous career as a Clinical Research Associate for the National Cancer Institute. She and her husband, a methodist pastor, have been married ten years and have lived in many communities throughout Ohio. Their son is six years old and has long outlived his initial estimated "expiration date" by four years. He has complex medical issues stemming from a dual diagnosis of polymicrogryria and POLG1 mitochondrial disease. He currently receives homebased school and therapy services, is non-ambulatory and non-verbal, gtube fed, and is ventilator dependent via tracheostomy tube. He is also the quirkiest and happiest little boy you could ever meet. His daddy his own personal rockstar, only second to an insatiable appetite for Gerber Cereal Puffs and continous loop Yo Gabba Gabba episodes. Anita is passionate about making sure mother's who have children special needs never go unnoticed, feel alone, misunderstood, or isolated. For the past five years Mommies of Miracles has been her second baby, and she has made it her mission to provide a free 24/7 support service to all mothers in need - without having to leave the comfort of their own homes.

Anita is proud to share group leadership with three truly dynamic co-administrators (all volunteers and all MOMs). Our collective leadership has many exciting services in store for the members of our group as we continue to grow and evolve into the worlds largest virtual support group for for mother's of special needs children. Email Anita



Pamela

Website

Illinois Regional Admin


I live in Decatur, Illinois with my husband, Jeff, and our son, Ethan. I taught high school Social Studies prior to staying at home with Ethan.

Ethan was born in 2010 and was diagnosed with Peroxisomal Biogenesis Disorder- Zellweger Spectrum Disorder (PBD-ZSD) when he was just 28 days old. PBD-ZSD is a rare, genetic, metabolic, terminal condition affecting all major systems of the body. Children with PBD-ZSD commonly experience sensorineural hearing loss, vision loss, hypotonia, seizures, developmental delays, liver and kidney issues, problems with bone formation, feeding issues, and adrenal insufficiency. Despite all of Ethan’s challenges he is, for the most part, a very happy little boy. You are welcome follow Ethan’s Journey if you would like to know more.

In addition to serving as the regional admin for Illinois Mommies of Miracles I am a proud member of the Board of Directors for the Global Foundation for Peroxisomal Disorders (GFPD), the non-profit dedicated to families impacted by PBD-ZSD. As the Registry & Support Group Coordinator for the GFPD I have helped connect more than 200 families in over 20 countries who understand the PBD-ZSD diagnosis and journey.



Machell

Website

Illinois Regional Admin


I live in Joliet, Illinois with my husband Chris and I am Mom to Samantha, Annika and Jake. Currently I am a stay at home and a Shaklee consultant, after running a home daycare for 9 years to be home with Samantha and then Annika and Jake. Prior to that I worked in management with Franklin Covey. My Hobbies include reading, cooking and Scrapbooking. Scrapbooking has become very therapeutic for me. I am also troop leader to my daughter, Annika’s, brownie troop.

Samantha had severe uncontrollable Epilepsy with Progressive Encephalopathy that began at 21 months after a status seizure that lasted over 6 hours. That seizure and subsequent bombardment of seizures left her quadriplegic, non verbal and with limited vision. No known cause, but vaccines were the most likely culprit and she was exempted after that. Seizure meds were not our friend and had some luck with the Ketogenic Diet (7 years on the diet), reducing seizures from 200 to 300 a day down to 20 a day once all meds were weaned. Our lives were blessed with her for 9 years before the brain atrophy reached her brain stem. (2001-2011). I know it may sound cliche’, but that wonderful little soul taught me more about myself and about living then I would have ever thought possible. My heart aches, literally, everyday that she is not here with me. I miss all our cuddle time and conversations curled up on the couch. I thank God everyday for the time I had with her and for my husband and my two other kiddos to help me through. -Forever Five

Back in 2007 I founded a support group In Joliet called Special Parents for Special Kids. We have been meeting in person the second thursday of every month ever since. We also connect through facebook between meetings.



Cheyenne

Website

Kentucky Regional Admin


Cheyenne : Kentucky Regional Admin

I am the blessed mom of 5 children ages 18, 15, 13, 13 and 8. Our oldest daughter has uncontrollable seizures, our middle daughter had seizures when young but better now and youngest was a preemie that was developmentally delayed, has seizures but controlled on medication. We became used to hospitals and specialists and the ups and downs of parenting special needs. Once they became more stable, we debated having a 4th child but decided there were so many special needs children who needed homes. We adopted our youngest at 5months old. He is missing a large portion of his brain and has Dandy Walker, CP, Epilepsy, Chronic Respiratory, G-tube fed, endocrine insufficiency, CVI, severe developmental delay, kyphoscoloisis, many ortho issues among many other problems that all come from those. He brightened our life beyond measure. We later adopted another. He has Dandy Walker Syndrome, hearing impaired, ADHD, developmental delay and seizures as well. I am an advocate for the Epilepsy Foundation and our family does all we can to raise awareness. I am also an advocate for special needs children in general and special needs adoption. Many people look at us and ask how do we do it or why would we do it. I just smile and explain I have the most rewarding life. Sure, it has its ups and downs, sleepless nights and heartache; but growing up, I could not have imagined my life to turn out any better. The simple smile of one of my children makes every day worthwhile. While most people look at me and feel sorry for us, I feel honored. It is truly an honor to be able to have the opportunity to be a mommy of a miracle.



Katie

Website

Louisianna Regional Admin & Blogger


I reside in Amite, Louisiana with my family of my husband and three sons. I am a special education teacher at our local public school. My hobbies include reading, cooking, hunting, and pestoring doctor’s offices for what my son needs!

My miracle Connor was born in 2006 with multiple disabilities. He has a brain malformation called schizencephaly which also caused his pituitary gland to be missing and optic nerves to be underdeveloped. He is severely developmentally delayed, blind, nonverbal, in a wheelchair, mainly tube fed, has uncontrollable seizures, blah blah blah…. Check out Connor’s blog if you would like to know more. To say it simply he is the light of my life! We enjoy very simple, southern living. As a family we enjoy swimming in the summer, making bon fires in the winter, and being proactive in our community trying to spread awareness of children with special needs!



Kara

Website

Missouri Regional Admin


I live in Missouri with my two daughters. Korah is 17 and a well known local artist. Jillian (best known as Jillibean) is 8, she has a complex rearrangement on her 13th chromosome (partial Trisomy 13). We spend our days laughing and loving eachother. I have been an advocate for Trisomy for four years. I love getting to know special needs kids and enjoy researching issues, needs, and topics of interest for families.



Vanessa

Website

New York Admin


I Live in Brentwood, New York with my husband six children. I am a stay at home Mom and currently going back to school for Nursing. My hobbies are reading, watching movies with my kids and advocating for special needs children

My youngest Isabel was born December 14, 2010 with Mosaic Trisomy 13. Since then I have spent most of my time researching and advocating for children with rare disorders.



Holli

Website

Oklahoma Regional Admin


I live in Sallisaw, OK with my husband, Adam and our four children. I am a stay at home Mom. My two older sons attend school online, and I spend much of time with school related activities for them.

All four of our sons have been diagnosed with gastroesophegeal reflux disease (GERD). My son Asher was born in July 2003 and has asthma and high cholesterol. My son Dimitri was born in July 2007 and has Cystic Fibrosis and asthma. My son Owen was born in May 2009 and was 5 weeks premature. He has Cystic Fibrosis, asthma, eczema, and a severe dust allergy and cat allergy. He is also lactose intolerant. My son Sebastian was born in November 2011 and was 8 weeks premature. He has cerebral palsy-spastic diplegia.

I am on the planning committee for Great Strides-Fort Smith, which is one of many fundraising walks for the Cystic Fibrosis Foundation. I am the team leader for the Great Strides walking team, Team Dimitri and Owen. My friend, Tiffany Whalen, and I are working on starting a special needs playgroup in our local community called Sallisaw Super Kids.



Vicki

Website

Pennsylvania Regional Admin


I live in Aston Pennsylvania with my husband Maurice and two beautful boys Evan age 4 and Nicolas age 2. Nicolas was diagnosed with Microcephaly with simplified gyral pattern and epilepsy and severe reflux when he was 2 months of age. Evan has been diagnosed with speech delay.

I worked as a Operations Manager for 15 years in the mortgage industry before having my Miracles.
I am now a work from home mommy and I have made it my life goal to create a safer and healthier environment for my family and I am now helping others do the same!

I love to cook, read, workout and go on camping trips with my family(yes as in we sleep in a tent). We are active members of our local church and I teach Sunday school to first and second graders. I am very happy to be a part of the MOMS team and look forward to helping others as so many have helped our family.



Susan

Website

South Carolina Regional Admin


I live in Greenville, SC with my four wonderful boys (Elijah - 12, Jeremiah - 10, Isaiah - 8, Josiah - 5 1/2), 1 very special girl (Rebekah - 3 1/2), my husband (Michael), and the rest of our Budd Zoo (3 cats, 2 cockatiels, 1 dog, 1 macaw, and 1 turtle). Rebekah has Full Trisomy 18 (Edward's Syndrome) and most of my time is spent juggling and managing our family schedule and Rebekah's complex medical conditions. Before kids, I was a Business/Systems Analyst and helped design software systems.

I am on the Executive Board for Hope for Trisomy, a 501(c)(3) nonprofit that focuses on rare trisomies and similar disorders. We fund research, promote education, and raise awareness through advocacy efforts. I am currently working on a major project called the H.O.P.E. Database Project - Helping Others through Parent/Patient/Physician Experiences. HOPE is also on Facebook. The end result, once funding and partnerships are secured, will be a multi-condition parent experiential database that will allow cross-searches against specific conditions and/or symptoms and result in a list of stories, photos, suggestions, options, surgery/intervention outcomes, contacts, and supports. This is unlike anything out there today and will put real faces and experiences to conditions - especially those for smaller communities that do not have major national organizations providing proactive and research funding.

I am an advocate for all trisomy children, and I spend a lot of time on my facebook pages and blog sharing educational and supportive information. I started a Facebook group for trisomy families a few years back that is extremely supportive and informative. Please join us if you are facing a rare trisomy!

We have a few additional Trisomy Facebook groups as well. Southeast Trisomy Families and Trisomia 18/13 (Apoyo para la comunidad de hispana) los estados unidos



Kim

Website Kim : South Carolina Regional Admin

I reside in Greenville, SC. I am a single, adoptive mother to two handsome young men. Both were adopted through Foster Care. Alsten is a health, happy 11 year old who loves to play with Legos and build robots. Noah is my Miracle. At 3 months of age he was shaken and went into Cardiac Arrest. He was “Down” for 10 minutes before oxygen was started. Noah has Cortical Visual Impairment (CVI), Severe Developmental Delays (10 month adjusted), Seizures, and has Sensory Processing Disorder (Both seeking and avoiding). Due to his SPD he refuses to eat very much and has a G-tube (low profile mickey). I have recently started him on a Blended Diet and he is progressing well. I am a huge advocate for Foster Care and Adoption. I am a Paramedic/RN, but am taking time off to get Noah’s therapies and specialty appointments straightened out.



Alisa

Website

South Carolina Regional Admin


Alisa : South Carolina Regional Admin

I live in Greenville, SC with my husband, Frank and two children, Alex (6) and Madelyn (3). Recently, I went back to work part time as a Program Assistant for Family Connection of South Carolina. I enjoy spending time with my family at home, dining out with friends, and crafting.

My miracle is Madelyn. She was born in April of 2009 after a “perfect” pregnancy. She had her first seizure the night she was born and we spent the next 8 months meeting with specialists and running tests that eventually lead to her diagnosis of 2q23.1 Microdeletion Syndrome. It is an extremely rare chromosome disorder in which she is missing a large portion of her second chromosome. Some of Madelyn’s biggest challenges are seizures (currently under control with medications) and severe global delays (her Developmental Age is around 1 year). She is an extremely happy and determined child. Madelyn has been such an inspiration to me and everyone she meets.

As an advocate for families raising a child with special needs, I have been able to share our story and experiences with others through my blog, Lemonade Lifestyle. I also co-founded 2q23.1 Microdeletion Syndrome Support Group on Facebook. In 2009 there were less than 50 documented cases of 2q23.1 and today there are less than 150 cases. Our online support group has reached out to over 20 families around the world living with 2q23.1 and we have been instrumental in furthering research about this extremely unique chromosome disorder. When we received Madelyn’s diagnosis our entire world changed and we are so thankful to live in a community that embraces individuals with special needs.



Shelley

Website

Texas Regional Admin


I live in Dallas, Texas with husband and two daughters. I volunteer at a shelter for abused / neglected children. I also volunteer as a teacher’s aide at Rise Academy a school for globally delayed children. My hobbies include reading, writing, gardening, and researching my daughter’s disease!

My miracle Zoe was born in 2001 after baffling the doctors and living in the NICU for 6 months Zoe was diagnosed with Congenital Central Hypoventilation Syndrome or CCHS (also called Ondine’s Curs). CCHS is a central nervous system disorder in which the autonomic (involuntary) control of breathing is low. For Zoe this means that the respiratory response to oxygen and carbon dioxide is sluggish at best during the day, and it is absent at night, when sick, or when stressed.

Zoe has many friends, and she is always sought after at lunch and at recess to play. She plays the piano beautifully, and she sings in the school choir. In short, Zoe lives a very full and rich life. Though I suspect we have to more frequently rush her to the ER and that we spend more of our vacation time in the PICU more than most families However there isn’t an ounce of quit in Zoe. As long as that is the case, there won’t be an ounce of quit in us, either. You are welcome to follow Zoe’s story if you would like to know more.



Emily

Website

Texas Regional Admin


I live in Plano with my wonderful Miracle husband and my three precious children. While my boys (adopted through foster care) are Miracles by way of their early childhood neglect and resulting developmental delays, my daughter Ilse (ILL-sah) is the one who gets all the Miracle attention due to her medical needs. She was born 6 weeks early by c-section because of my preeclampsia and her decels. I got to hold her for one brief minute before the neonatologist took her to the NICU. As soon as we had an inkling that something might really be wrong, we had her transferred to Medical City Children’s Hospital in Dallas and there began the hardest and loneliest month of our parenthood journey. I ached for her until I was released from the hospital and then I forced myself to recover from my c-section so that I could go hold her again. I got to hold my baby Ilse again on Mother’s Day 2011. Two weeks later at my husband’s insistence, Ilse was tested for and diagnosed with Smith-Lemli-Opitz Syndrome, and we began the foray into cholesterol supplementation, feeding tubes, immunodeficiency, developmental delay, and mental delay. Ilse’s first year was extremely difficult. Navigating weight gain, therapies, constant vomiting (8-10 times a day), sleep disturbances, and our own emotions and fears left us exhausted and afraid. It wasn’t until Ilse’s first birthday that I began to recover from my NICU PTSD and was able to look outside of myself to others who needed support and love. In addition to working with Texas Mommies of Miracles to help women on the same road as I am, I homeschool my boys and love on Ilse. Ilse is almost two now, and she is a sitting, weight bearing, laughing, goofy, joyful little girl who lights up our home and our lives. I call her my Blessing Baby, and she is truly a Miracle straight from God. If you like, you can read more on our family blog.



Haley

Website

Canada Regional Admin


I reside in Petawawa, Ontario, Canada with my husband Steven, son Nathan and two dogs. My husband is in the Canadian forces!

Nathan was diagnosed at 24 weeks gestation with an AVSD and Hypoplastic Right Heart Syndrome. He was diagnosed at birth (Feb 2012) with Down Syndrome, a Cleft Palate, a diaphragmatic hernia and hypothyroidism. He has had his pulmonary artery banded twice, due to doctors error the first time and will be having his Gtube placed and palate repaired in February.



Siobhan

Website

United Kingdom Regional Admin


I’m MOMMIE to Bradley, he’s my miracle!

Bradley is 14 years old and has complex medical needs, we have no diagnosis but a plan to treat each issue which comes along. Bradley has an un-named overgrowth disorder which means he grows an average of 4 inches in 6 months! He has a bone disease which has affected his spine and ribs leaving him with multiple vertebral fractures and rib fractures, he is in constant pain. Bradley has a porta-cath and has treatment through that every 3 months for his bone he has diabetes type 2 and kidney and blood pressure issues. Bradley also has severe hypotonia, all his joints over- rotate. Bradley also has severe learning disability and attends a special school.

I’m married to Rob, Bradley’s Daddy, I was a nurse in learning disabilities for 20 years which I loved but stopped work when I had Bradley and we realised life was going to be different!
Bradley is a joy to be with he has an amazing sense of humour and is my gentle giant.
I love being a mum and an advocate for all thing Special!
Hope this is what you’re looking for!



Jodi

Website

Pinner


I live in Berne, Indiana, the heart of the largest Swiss Amish settlement in the country. I am not a special needs mom (or even a mom), but have been a special education teacher for 10 years and my students and their families are my entire world. In college, I triple-majored in special education, music therapy, and music education and am licensed in almost all areas of special education (and music education), but my passion lies in working with those with the most severe and multiple disabilities. I’m an autism specialist and AAC & Assistive Technology nerd. I am in the process of opening a unique (NOT babysitting) day services program, called Cherry On Top, for adults with severe, profound, and multiple disabilities. The initial clients are my former students who “aged out” of education and had no appropriate options for services in their communities. I am also working with the local Amish to open a Cherry On Top program for their adults with developmental disabilities and am very excited about this project!

When I’m not working on Cherry On Top, I am restoring a giant historic home to open as a bed & breakfast that will, eventually, be one of the job placements for some Cherry On Top clients. My entire mission with the bed & breakfast is to create real job opportunities in the community in a supportive setting with real-life socialization opportunities. I’m doing the restoration myself and it’s a huge project! I’m assisted by a chihuahua named Sadie Mae and a 17-year-old grumpy, crabby, bitter, fat cat named Harriett Gertrude.

I am a confessed Pinterest and facebook addict and am excited to be pinning for Mommies of Miracles. You can check out my personal Pinterest boards (the boards labeled COT are special needs boards for Cherry On Top & most others are related to my house restoration), like Click’s Corner on Facebook, follow me on twitter, and become a fan of the Cherry On Top Facebook page. I also have a website with resources for special needs families.



Tiffany

Website

Pinner


I am a stay at home Mom with 2 kids and one on the way! I stay busy with my blessings and also enjoy spending time with my husband, reading, traveling, and being outdoors. My miracles are Isaiah, a rambunctious 3 year old, and Ruby, my 2 year old gem. She is a blessing to our family. We are learning a lot about cerebral palsy and have been so encouraged by all the MOMs! I thank God for all of the encouraging people helping us along this journey. I am very excited to be helping out with the Mommies of Miracles Pinterest page! I am a big fan of Pinterest, AKA “organizing the internet.”



Stefanie

Website

California Regional Admin


I live in Clovis CA. I graduated from Clovis High in 2005 and married Alex (my senior year prom date) in 2007. I graduated in 2010 from Fresno Pacific University with a Bachelors in Liberal Studies. I found out I was pregnant with our first baby in April 2011. The first few weeks went wonderful! At 18 weeks we went in for a routine ultrasound and our world was turned upside down! We were told Emilee had Nonimmune Fetal Hydrops. Which is when the baby is severely anemic and has massive ascities and is in heart failure. We were sent to San Francisco for an Inutero Blood Transfusion. A week later when we went back for a check up we found out, the transfusion was unsuccessful and that she had suffered a stroke. We were only 22 weeks along by that point so they gave us the option to medically abort her. They told us she had less than a 2% chance of survival and even if she did survive, the effects of the stroke would be severe. We decided to let her decide. She kept fighting. We tried one more Inutero Blood Trasfusion, which was also unsuccessful. But she kept fighting. She decided she wanted to be born at 34 weeks by c section (October 17th 2011) When she was stable we did an MRI which revealed cerebellar hypoplasia, damage to the corpus callosum, schizencephaly, ect. They told us she would never breathe on her own, eat on her own, walk, talk… They again told us we could take her off the vent and “let her go”. But much to their surprise she Could breathe on her own! She spent 6 weeks in the Nicu and came home on an NG tube. A week after being home she started taking all her bottles! She is now 2 years old and is in early intervention, PT, OT and Speech therapy. After seeing an opthomologist we found out she optic nerve hypoplasia and is farsighted. She has cute little pink mira flex glasses! She can feed her self dry foods now and drink out of a straw. (She has a cows milk allergy and is on almond milk.) She can roll all the way across the living room. She can sit unsupported for up to 15 minutes at a time! Most important to Alex and I…. She smiles and she laughs! We don’t know what the future hold for our miracle baby but we will always strive to make sure she is happy and receiving every service available. We are hoping to connect with other families who understand; sharing experiences, ideas, resources and encouragement. Emilee is a big sister! Madalynn was born full term in 2013 via repeat c section. She has hip Dysplasia but is otherwise doing great.



Heather

Website

Virginia Regional Admin


Heather : Virginia Regional Admin

I am a stay at home mom of two daughters. My husband, daughters and I live in central Virginia. My younger daughter has complex V mitochondrial disease (a mutation in her ATP6 gene). She has a central line and is fully TPN dependent, a GJ tube for medications, a vesiscostomy, and oxygen support. She loves life and enjoys playing with her dolls, baking cookies, coloring, and doing homebound kindergarten. I co-founded a support and educational group for parents of children with complex needs and is a strong advocate for parents who have children who spend a lot of time in the hospital or are seeing many different doctors. I also sit on the Pediatric Family Advisory Board at a major children's hospital, am an ambassador for the United Mitochondrial Disease Foundation, a volunteer with the MitoAction 411 hotline, and also a volunteer photographer for a number of charities providing free photography sessions to families of children who are sick.



Joanna

Website

Blogger


My name is Joanna, and I live in upstate NY with my husband Dave and our daughter Elizabeth. I work full time in the IT field.

Elizabeth is our only child, and just celebrated her 2nd birthday. She was born prematurely at 27 weeks gestation with an atrial septal defect (ASD), duodenal stenosis caused by an annual pancreas, and an anterior anus. I had polyhydramnosis, placental abruption, and went into labor after my water broke. She was delivered by emergency C-section. She spent 100 days in the NICU, came home on oxygen/monitor, and has had 4 surgeries so far (duodenal stenosis repair, analplasty, insertion of G-tube, ear tubes/adenoidectomy). Her ASD has almost completely closed on its own, which we are thrilled about. Elizabeth has extreme oral aversion and feeding issues, in part due to very bad reflux; she also has had continuous weight gain issues/failure to thrive. We have worked with speech/feeding therapists intensely, and she is doing much better with oral intake although we still struggle with gaining weight (even with the G-tube). We are just finishing up working with physical therapy and are able to cut back on services. We identified sensory issues a long time ago, but due to quirks with NY Early Intervention, she only qualified for services just recently. We have just started OT and have a lot of catch-up to do. Her genetic testing showed 42 genes on chromosome 4 that are identical – but unfortunately no one can tell us what that means and we are in the process of seeking second opinions. Elizabeth sees multiple specialists and her appointments keep us busy. Her main issues at this point are still feeding and sensory. She is a very social and happy toddler, shows a love for learning and playing, and is most content while reading her books.

Elizabeth has changed the way my husband and I view life, and we would do anything for her. We never imagined having a child with special needs, but it has made us better people and better parents. We are much more patient, tolerant, and understanding than I would have ever thought. She is our everything and makes our lives complete. I am thrilled to be able to join the MOMs team as a blogger, as I have always loved to write, and now have a truly worthwhile and helpful forum to express my thoughts.



Marcia

Website

Blogger


My name is Marcia Minutello, I am the mother of 4 daughter, 3 are adopted and have special needs. For the past 28 years, I have been a Professional Photographer before that, I was a Real Estate Broker in the prestious StoneyBrook, Setauket area of long Island.

We relocated to Florida about 21 years ago in an effort to spend more time together as a family. My girls are grown now, the oldest adopted girl is a mom of a 2 year old son, she could not raised him without the help and concern of the rest of the family, so there we were, ready and willing. My next daughter lives in Tampa, has a wonderful job a great boyfriend and, although Learning Disabled, is so gifted in Art that she has begun her own small business where she creates, one-of-a-kind art pieces by special order. My youngest daughter has Cerebral Palsy and is in a wheelchair. When she was evaluated at 10 months old, we were told she would have a very limited life, the belief was that she was intelligent to some degree but that she would never be able to show any of that. She is in her senior year at college, on her way to a her Batchelor of Psycology Degree and is continuing on in a special Masters/PHD program with Public Policy and Journalism as her course of study. She is an advocate, meeting the governor a number of times, she works closely with the Agency For Persons With Disabilities here in Florida and now hold the title of Ms. Wheelchair Florida USA, a service pageant which gives her an even wider audience for her work. I have my natural daughter who is married and has three wonderful children, she serves in county government as a Senior Strategic Planner. Last but very far from least is my husband, Bob, we will be married 30 years in Sept. He has traveled this road with me, sometimes it has been stressful and sometimes awesome it has been an incredible journey so far and hopefully there is much more to come!!

You can also follow me on my person blog.



Kathy

Website

Blogger


I am a (predominantly) stay at home Mum to my beautiful daughter Sophie. My previous experience includes working for 20 years in the field of social and market research, including a four year stint working as a Senior Researcher and Policy Adviser to the Queensland State Government Department of Disability Services (Disability Services Queensland). I am a trained counselor and a passionate writer. I have been published in Australia's leading parenting magazine (Practical Parenting). I have recently started to write my own blog, with the aim of sharing our story, and providing support and assistance to other parents who have children with special needs.

I have been with my husband Frank for 13 years. Our beautiful daughter Sophie came to join us four years ago. Our little ray of soul shine. Sophie came to us with many things…purity, innocence, courage, wonder, curiosity, joy and lessons to teach. She also came with a little something extra…Kabuki Syndrome and Asperger’s.

Like many kids her age, Sophie enjoys being read to, playing in the park, camping, going to her wonderful Montessori daycare, painting, jumping on the trampoline, playing with her train set and cars, spending time with her Nana and Papa, listening to music and dancing along. She just loves life!

Unlike most other kids her age, Sophie has 12 medical specialists (down from 19!) and four therapists. She works hard to achieve things that come naturally to most children. She has had more doctors appointments in her few short years than most of us will have in a lifetime. She has had to undergo surgery, hospitalizations, multiple blood draws, X-rays, hearing tests, EEGs, speech therapy, physiotherapy, horse riding therapy, occupational therapy, social skills therapy and more. Her weeks are very busy!!! Sophie has low tone, delayed fine and gross motor development, social delays, speech articulation issues, immune issues, issues with her endocrine system and various food intolerances. Her therapy and medical needs will be ongoing….this is a marathon, not a sprint. Despite Sophie’s many
challenges, she is an absolute joy to be around. Life is not always easy for her, or for us, but we feel blessed to have her in our lives.

You can also follow me on my personal blog.



Kate

Website

Blogger


I am a stay at home mother with a love for both photography and writing. I studied Psychology and Creative Writing Arts at Oswego State University in Upstate NY. I have several published writing pieces as well as a personal blog. Likewise I have also expanded my love of photography more recently to encompass a certain professional level to which I am quite proud.

I have been with my dear husband for nearly 10 wonderful years. In that time he has blessed me not only with his son to which I have had the pleasure of helping him raise, but also three other children together. There has been a lot of love and laughter in these years, but also a tremendous amount of struggle and pain. Two of our children were born with a rarely understood genetic disease called Mitochondrial Disease and their sister is thought to have some effects as well.

Like most kids they love; playing, going to the park, the latest toys, all those wonderful cartoons, making messes, learning new things, and driving their parents whacko, but they also have many difficulties that most kids do not have. Collectively they also have; GI Disorders, Lung Disease, ASD, Epilepsy, Muscle Weakness/Hypotonia, Chronic Fatigue, Hypoglycemia, Developmental Delay, ADHD, SPD, Chronic Bone Marrow Suppression, Food Allergies, Dysautonomia, and more…

Their laundry list of medical problems leaves them each with a team of doctors and specialists to keep everything in order. They also keep us on our toes and balancing on the edge of our seats. They are my world and they make it so much brighter. The joy we experience with these guys is enough most days to overshadow the heartache and for that, for them, we could not be any more grateful.

You can also follow me on my personal blog.



Serena

Website

Blogger


Even as a little girl I never wanted to have children. I barely played with dolls, you could usually find me outside playing with the boys. I was terrified of so much responsibility, and then there was the ultimate question: What if it's not okay?

My first son, Jeffrey, was an unplanned baby, but I vowed that I would be a good mom and raise him right. His dad and I eventually married a few years later and planned our second child. Why did I want more? I have two sisters, whom I love dearly, and I could not fathom raising an "only child".

Jaxson came into our lives on July 4, 2012. Early in my pregnancy we knew something was wrong, my quad screen came back at high risk for Trisomy 18. My doctor gave me a website to look at and I cried for days. T-18 is almost always fatal in the first year of life. We could have done further testing to be sure, but it wouldn't have mattered and I didn't want the stress of an amniocentesis to make things worse. So I had ultrasounds every few weeks to monitor him closely. It was determined that Trisomy 18 was unlikely, but he was definitely going to have a heart defect, possibly Hypo-plastic Left Heart Syndrome. I cried some more, then gathered myself together and kept up with my job as a mom, my career, my marriage and countless doctors appointments. Toward the end of my pregnancy, Jaxson wasn't growing well and I underwent non-stress tests twice a week to make sure he was still doing okay. I was scheduled for a C-Section on July 17, but he decided that he wasn't going to wait any longer and graced us on Independence Day.

Having already met with the Neonatologist, I knew that Jaxson would be taken straight across town to Nationwide Children's Hospital. I also knew that he would talk to me while I was on the table. He gave it to me straight, like I had previously asked him to do. It was heartbreaking. The back of his head was flat, he has a hole in the roof of his mouth, and more. As I cried on the table, the nurse anesthesiologist wiped my tears while my husband went to see our precious gift. No one got to hold him as he was put straight into an isolation unit for transportation, and they began heart medication to keep the space between the right and left ventricles open. We did get to see him, and I got to hold his hand and kiss his cheek before he left, but then it was two days of agony before I could see him.

What we learned after Jaxson was transferred to the NICU at Children's was beyond astounding. Jaxson was born with a cleft palate (not lip), a bicuspid aortic valve, tethered spinal cord with a syrinx, bi-lateral coronal synostosis, bi-lateral sensorineural hearing loss, optic nerve anomaly, vision impairment, a stone on his left kidney, a cyst on his right kidney, partial deletion on Chromosome 15, hypotonia, hypertonia, and a Chiari I malformation. Since then, he had his lambdoid and sagittal sutures in his skull fuse, he has a developmental delay, speech delay, failure to thrive, GERD, eczema, Rapid Airway Disease, short stature, feeding problems and hydrocephalus. He has had eight surgeries: three on his skull, one on his brain, feeding tube placement, ear tubes, tethered cord release and cleft palate repair. He has wide-set eyes, large ears, a large nose and a wide smile with a small jaw. His hands and feet are also large and he will be getting orthotics to assist with his balance. He's slept through the night a handful of times in his two years of life, although he has not been diagnosed with a sleeping disorder.

In spite of all of his issues, Jaxson brings light and joy everywhere he goes. He is loved by many and fiercely protected by his big brother. Jaxson always has a smile, and he smiles with his whole face so that it's impossible not to smile back! His mental capacity seems normal if not advanced for his age. He is nearly fluent in American Sign Language (which we are all learning with him!) and communicates well. People mistake his inability to speak as a mental problem, but it's not, it's a physical problem that will correct itself in time. He goes to physical, occupational and speech therapy. He attends a developmental school 4 afternoons a week to help his social skills as well as provide more therapy to get him caught up. He has scars on his head and spine, his teeth are coming in slowly and in the wrong order, and he has blue-green veins on his face, chest and stomach. You can take one look at him and know something is up, but then he flashes that smile and bright blue eyes at you and it's all over.

Jaxson and Jeffrey are the light of my life. I am a stay at home mom after spending four years in the banking industry. Despite my feelings earlier in life, I wouldn't change it for anything!