About Us

Meet some of the families organizing this Walkathon:  the MacDonalds, the Petersons, the Pettys, the Rokickis, the Scappaticcis, the Weinrauchs, and the Zerials.

 

The MacDonalds

Annie was born on January 6, 2005.  A beautiful, healthy, strong little girl that smiled from day one.  She was a delight, very quiet, peaceful and delicate.  At 9 months of age everything changed.  Annie fell off her weight charts, failed to meet milestones and became very sick.  She cried for hours inconsolably.  Then she had a seizure.  Tests were done and finally at 15 months of age Annie was diagnosed with Rett Syndrome.  After the initial shock of the diagnosis wore off and through the process of grieving we decided to do everything we could to help Annie acquire new skills and fight to keep the ones she already had. 

Annie is a happy, 10 year old girl.  She is able to stand independently and walks with assistance.  She doesn’t say any words but speaks volumes with her engaging eyes and infectious giggles.  Annie loves music, animals, people, and going for runs in the jogging stroller but her favorite times are spent playing with her brother and sister.  Annie is in preschool 4 days a week and attends occupational therapy, physical therapy, hippotherapy, animal therapy and augmentative communication.  She has a beautiful personality and an attitude of strength and determination.  Annie teaches us about love, patience, acceptance, hope and faith on a daily basis.  She truly is our angel. 

 

Rett Syndrome is a devastating disease that has robbed Annie of any sort of independence.  She is not able to run, color, sing, dance, feed herself, reach for a toy, or tell us her needs and wants.  Annie’s autonomic system has been affected, she has trouble chewing and swallowing and is fed through a g-tube for extra nourishment.  She has anxiety, poor circulation, severe digestive problems, trouble regulating her breathing and body temperature, disrupted sleep patterns and scoliosis.  Annie will need 24 hour care for the rest of her life.  Currently there are no treatments or cure for Rett Syndrome. 

 

Despite the grim reality of Rett Syndrome there is hope.  Research for Rett Syndrome has uncovered its cause, a genetic mutation in the MECP2 gene.  In February, 2007 researchers successfully reversed Rett Syndrome in a mouse model.  Treatment and a cure for Rett Syndrome is now within reach.  We believe that Rett Syndrome will be the first childhood neurological disorder to be cured but we need your help.  Annie’s miracle is around the corner, the science is there, the funding is not.  Without private funding our cure will remain decades away.  Please help us is making this dream a reality and giving these girls a chance at life! 
 
- Bridget & Scott MacDonald
 

The Petersons

On February 1, 1998, we welcomed the arrival of our first child, Jillian.  Although always a happy and content baby, after several months it became apparent that Jillian was not reaching important developmental milestones like walking or talking.  For more than two years, we went from specialist to specialist trying to discover what was causing this failure to develop.  In November 2000, we noticed that Jillian was breathing very strangely (in hindsight a hallmark of Rett Syndrome).  The next day Jillian suffered the first of many seizures.  She was hospitalized for several days, and shortly thereafter she was tested to see whether she had a mutation in the Mecp2 gene.  She did, confirming the preliminary diagnosis of Rett Syndrome.

Jillian is now 19 years old, and for several years her seizures have been controlled by medication.  In general she has been remarkably healthy, particularly since her October 2009 spinal fusion surgery to straighten her spine which had a130 degree curve.  However, girls with Rett Syndrome face a host of medical challenges throughout their lives – from seizures and scoliosis to feeding and breathing difficulties, to potential cardiac complications.

We live in Novi along with Jillian's brother Drew and her sister Kara, as well as Hammond, her social support dog.  She loves listening to music, watching her favorite TV programs, and -- most of all -- swimming.  She is a happy kid whose smile brightens even the darkest day, and we feel very blessed to have her in our lives. 

- Colleen & Jeff Peterson

 

The Pettys

Hailey was born on March 20, 2002 and although she came into this world with some immediate health issues, she was a strong, beautiful and happy baby.  As time went by, Hailey began to fall off the charts and miss her milestones.  She lost her speech and hand mobility and began to suffer from various medical problems. After many tests, we received the devastating diagnosis of Rett Syndrome in August of 2004. 
 
Today, Hailey cannot walk unassisted, talk or feed herself.  She is 100% dependent on others to assist her with everything.  She suffers from poor circulation and cannot regulate her body temperature.  She often suffers from anxiety, seizures, disrupted sleep and Parkinson-like tremors.  She communicates with her beautiful blue eyes and switches and she gets around with the assistance of others in her wheelchair.  She wears braces and takes many medications throughout the day for seizures and severe Acid Reflux.  She receives physical, occupational and speech therapy and attends Glen H. Peters School in Macomb, MI.  Hailey loves to hang out with her twin brother and sister and loves, animals, Dora and Diego!
 
Although she cannot walk or talk independently, she speaks volumes with her eyes and is a very happy beautiful little angel.  Her laughter and smiles light up our lives and are contagious!  She is truly a gift from God and has taught us love, patience and kindness to say the least. 
 

Despite the devastating reality of this disease, there is hope for Hailey and the thousands of girls who suffer from Rett Syndrome worldwide.  Researchers are working daily to find a cure or treatments for our girls.  Please come and walk with us as we get closer to a cure!

 

- Shelley and Jeremy Petty

 

The Rokickis

Olivia was born on April 12, 2003.  She was our 2nd child and our first and only daughter.  She was born 4 weeks early but was a healthy, delightful baby.  Around 6-9 months of age, it was apparent that she stopped meeting milestones and was diagnosed with congenital hypotonia at her 9 month check up.  Over the next year, her tone did not improve and she steadily lost all her skills as the devastating regression phase took over.  Initial tests did not confirm Rett Syndrome but we lived the next year as if she did have it.  It wasn't until her 4th birthday while in South Carolina following up at a clinic for another syndrome that a neurologist from Utah thought she had, a Rett specialist discovered that Olivia was never tested for a deletion of the MeCP2 gene that causes Rett Syndrome.  Sure enough, we had our confirmation - it was indeed Rett Syndrome that Olivia was suffering from!
 
Olivia is now a 10 year old girl who is vibrant and full of love.  She  has been relatively healthy but does suffer from periodic seizure episodes and reflux disease.  Her eyes will tell you a thousand words as this is her only means of effective communication.  Through hard work at PT, she is beginning to gain strength to stand with assistance and our hope is that Olivia will be able to walk one day soon.  We have begun the process of obtaining an eye gaze communication system through the insurance as her evaluation went really well.  Our hope is for Olivia to build skills to communicate with a device and make her own choices one day.
 
Despite all the good news, Rett Syndrome continues to be a devastating disease that affects Olivia as well as thousands of other girls world wide.  Frequent seizures, painful reflux disease, orthopeadic disorders, repetitive hand wringing and teeth grinding, as well as irregular breathing patterns are only a few of the sequalae of Rett Syndrome.  With so many researchers and Rett specialists confident that this will be the first curable genetic disorder, significant advances and treatment are just around the corner.  Please join us on our walk-a-thon and raise money to help stamp out Rett Syndrome!
 
-Amy & Jeff Rokicki
 

The Scappaticcis

Isabella was born on October 31, 2002, a healthy, beautiful and content baby.  She developed normally until the age of 12 - 15 months, when we became concerned she missed a major milestone.  Over the course of the next year, we sought consultation of several local specialists, and simultaneously through the same time period, skills she had acquired began to disappear (the regression stage of RS).  Isabella lost the few words she had learned to speak, and the usage of her hands.  She developed the repetitive hand movements which we later learned was a clinical characteristic of Rett Syndrome.  Finally, a physician suggested testing for Rett Syndrome and the results were positive for the MeCP2 gene mutation.  Words cannot describe our devastation!  She was just 26 months old, and that call changed our lives forever.

It has been a long journey since the day we received that call, but Isabella is a wonderful 14 year old with an extremely positive attitude and determination which inspires us every day.  On a daily basis, Bella receives medication to control her seizures and acid reflux.  She attends physical, occupational, music, speech & horse therapy.  Through all her hard work she has strengthened her core region and continues to give it her all!                           

Isabella’s giggles, smiles and big brown eyes bring joy to our lives.  She loves being with her family & friends, listening to music, playing baseball on the Miracle League, riding horse and her adaptive bike.  She has taught us so much about what is truly important in life and unconditional love! 
 

We look forward to the day when Isabella and the thousands of girls with Rett Syndrome get back what the disease has taken away.  Rett Syndrome is a devastating disorder and we truly believe, along with Rett specialists that one day a treatment or cure for Rett Syndrome will be discovered.  Please come join us at the Quest for a Cure Walkathon and help make a difference!

 
-Roberto & Wendy Scappaticci
 

The Weinrauchs

  
 
Emily was born on August 11, 2005.  She is our only child and has seemed to like receiving all of our attention.  From a very young age, Emily always tried to engage anyone around her with her smiles and infectious giggles.  She spoke early and reached all her developmental milestones early or on time, with the exception of walking toward the later end of the normal range.  Emily had a large vocabulary and was speaking in short sentences when her regression started around the age of 26-27 months.  We first noticed something was wrong when she started mispronouncing words and calling things by the wrong name.  Emily was first diagnosed as having mild autistic disorder since no other symptoms of Rett Syndrome were obvious at that time.  We later had genetic testing performed and a diagnosis of Rett Syndrome was confirmed when she turned 3.  Due to the late onset of Emily’s regression and the fact that she has retained a few words, some hand use, and her mobility, she is classified as having atypical Rett Syndrome. Once we learned of Emily’s diagnosis, we did everything we could to try to help her retain her abilities and prevent further loss of skills.  This included her starting school in the Early On program and attending many therapies.  Emily has attended speech/communication, occupational, and physical therapies as well as participated in the PLAY Project.  More recently she has been in communication therapy using an eye gaze computer, which has helped significantly to open her world of communication. Emily was in public school since the age of 2 1/2 but we began homeschooling during the 2016-2017 school year.  Emily loves watching episodes of her favorite TV shows, having books read to her, listening to music, swinging, riding her adaptive bike, and taking rides on our lawn tractor.  Her interests also include animals and science.

-Karen & Bill Weinrauch

The Zerials

“Life is not a matter of milestones, but of moments.”

Rose Fitzgerald Kennedy

 

Please share a moment of your life with us and join us for the Walkathon to benefit

Rett Syndrome Research!

 

Mia Lorraine Zerial was born December 26, 2003.  She was beautiful, happy and content to be part of our growing family!  She was such a great baby, always able to “go with the flow” of our daily lives and never complained.  Early on, in our regular pediatric checkups, concerns were discussed about Mia not meeting the “milestones” that other babies do.  We were concerned about her development and started to investigate what was going on.  After numerous tests to rule out other developmental issues, the start of intensive physical therapy, in-home therapy, a visit with the neurologist and numerous blood tests, it was confirmed that Mia had a disorder known as Rett Syndrome.  Mia began to loss some of the skills that she had attained, such as self feeding; by the time she was just 2 years old.  She never spoke a word through all of this, yet her strength is what made us realize that WE needed to be stronger than ever, for Mia, as well as all the new friends we had made within our Rett family!

 

Mia continues to receive physical therapy services twice each week where she has made tremendous strides in managing her strength and stability.  Currently, Mia is learning to walk with the assistance of a gait trainer (walker).  She loves to stand, supported, and now is able to walk aided with the support of another person as well.  She is doing AMAZING work and we are so proud of all she has accomplished!  Mia also attends school each day and enjoys the company of her peers and the friends she has made.  It is very apparent that Mia knows who her friends and family are, and even though words are not verbally spoken, Mia and her friends share conversations through their actions and eye contact.  Mia is very aware of her surroundings and loves to be on the go, just as she did when she was an infant.  Mia enjoys our family outings and all that she is able to be exposed to!

 

Mia is not able to feed herself, but still enjoys food.  She had a feeding tube surgery in December 2008 and now she is able to get supplemental feedings at night, while sleeping, to ensure she has the most balanced diet and nutrition.  It was a difficult decision, but one that we are happy we chose as Mia is healthier now than ever before.  Her determination each day is a constant reminder that we made the right choice!  Mia also suffers from seizure disorder and regularly takes medication to keep the seizures under control.  She has routine EEG tests, blood work and doctors visits to ensure she is kept in the best health.  We are very fortunate to have a fabulous team of professionals that help us make Mia’s life the best it can be!

 

Mia, and all the other girls that live with Rett Syndrome each day, deserve a chance to someday see what life can be like without this devastating disease.  It is up to us, as parents, families, friends and supporters to raise the funds to support the constant ongoing research that WILL, someday, be our Quest for a Cure of Rett Syndrome.  We ask that you consider our cause and hope that together, we can make a difference!

 

-Mark and Michelle Zerial

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