The Impact of Volunteering – Rhiannon Cullip, GVSU

Rhiannon Cullip is studying Health Communications at Grand Valley State University and is also a volunteer at DSAWM. “I had the opportunity to volunteer at your Step Up for Down Syndrome event in October and was inspired by the work that your organization does for the community. I  was happy that I chose to spend a Saturday doing something that I hadn’t done before. I had a wonderful time meeting some of the children and watching them have the time of their lives.” Inspired by her own experience, Rhiannon opted to share the importance of volunteering at DSAWM on our blog. 

Grand Rapids, MI – The Down Syndrome Association of West Michigan, founded in 1985 by six couples that had children with Down syndrome, is comprised of around 300 members and 200 volunteers annually.  Without volunteers, the organization would not be able to provide love, hope, and a community of resources for individuals with Down syndrome and their families in 12 west Michigan counties.

Down syndrome is a chromosomal condition that affects about one in 700 babies and occurs when there is an extra copy of chromosome 21 in a child’s genes. It is the most commonly occurring chromosomal condition and about 400,000 people in the United States are currently living with Down syndrome. It affects a child’s development and cognitive skills, but does not hold the individual back from day-to-day activities, having friends and a social life, or living a life of happiness.

“Volunteers are integral to our organization. Our board of directors is comprised of community leaders, professionals, and parents who volunteer their talents to providing governance and leadership to DSAWM,” said Meredith Lange, Community Relations Specialist at DSAWM and mother of a daughter with Down syndrome, “Volunteers run many of our programs and fill our event planning committees.”

The annual event that DSAWM organizes each year, Step Up for Down Syndrome, requires roughly half of their volunteer base for the year with 100 volunteers to plan, design, build, cater, and entertain in preparation for and on the day of the event.

“Without those volunteers, we would lose our largest fundraiser.  This year we raised roughly a third of our annual expenses at Step Up,” Lange said.

The other various undertakings that volunteers provide for the DSAWM include being buddies for their weekly Buddy Up Tennis classes, grant writing for the association, and leading Cooking Capers cooking classes.  “The greatest impact occurs on a peer-to-peer level.  With our children, teens, and adult members we have found that working with someone they look up to is a huge motivator,” Lange said.

Haiying Kong, professor at Grand Valley State University, mother of a son with Down syndrome, and member of DSAWM, shared her experience with her son’s diagnosis and her family’s involvement with the association:

“When my son was born in the hospital it was very sudden with the diagnosis because we didn’t get the diagnosis during pregnancy. So when the diagnosis was confirmed three days later, a neonatal intensive care unit (NICU) nurse told me about the Association. I received a call from a mother who was a member and she invited me to a support group for mothers of children with Down syndrome. I then began to attend this group and became a member of the association,” Kong said.

Not only do community members contribute, but DSAWM members help each other out too. “[DSAWM] is very much based off of volunteers. I and other parents have volunteered to take care of the kiddos for some of the informational events where the parents are attending and need help taking care of the kids for a bit,” Kong said.

Lange has a daughter with Down syndrome and said she now knows that what she thought was a curse was actually a blessing.  She said they received her daughter’s diagnosis prenatally when she was 14 weeks pregnant and received information from DSAWM with helpful resources that allowed her to connect with other parents in the same situation and gave her access to programs that provide informational and emotional support for her daughter and family.

“I began by taking advantage of their programs and services (I still do) and as the time passed, I wanted to provide the same kind of support to other families so I began volunteering as a Parents for Parents mentor and an organizer for their Mom’s Night Out event,” Lange said. Two years ago Lange transitioned from being a voluteer to holding a staff position in the association.

She said her daughter has taught her so much about what is really important and because of this she has become a happier person:

“[My daughter] has taught me to value people for who they are, not what they can do.  She has taught me patience and to really celebrate even the smallest victory,” said Lange, “I think that if I had the opportunity to volunteer at DSAWM when I was younger, I would have learned all of that then and finding out my daughter had Down syndrome would not have been scary or terrible.  I would have already known she was a gift.”

Lange said that they list their volunteer opportunities on their website and share them with local high schools and universities. “Young people are always looking for ways to give back.  We also benefit a lot from word of mouth.  We find a lot of our volunteers are friends or family members of someone with Down syndrome or have heard about our organization from another volunteer,” Lange said.

Tim Halpin, graduate student at Grand Valley State University and volunteer at the DSAWM since January 2015, said he heard about an opportunity with DSAWM during a GVSU Pre-Physician Assistant club meeting.  DSAWM had just started Buddy Up Tennis when he contacted them and he became a regular volunteer buddy for the weekly athletic program. Halpin also volunteered this past summer with the iCan Shine Bike Camp – where he spent 75 minutes a day teaching children with disabilities to ride a bike, the Step Up for Down Syndrome awareness walk, and he serves on DSAWM’s Medical Outreach Committee. “We are trying to gather better information for patients who get a diagnosis, either prenatal or after birth,” Halpin said. He dedicates a couple of hours a week to making calls and setting up meetings for the group.

It was fairly easy for Halpin to sign up to volunteer and several students have followed his lead after hearing about his experience with DSAWM. “I really enjoy doing it. It is something that makes me feel better and I know, no matter how small, I am making a difference for these kids.  Also, it makes me slow down my life and realize what is important,” he said.

Lange shares more about where their organization would be without volunteers:

“Without volunteers, we would lose our largest fundraiser, Step Up for Down Syndrome, and a third of our funding.  We would not have Cooking Capers and teens and adults with Down syndrome would lose the opportunity to learn a valuable life skill.  There would be no bike camp, where kids with intellectual disabilities learn to ride a bicycle – a skill that gives them confidence, an opportunity to engage with their peers, and a lifetime of mobility in a population that typically doesn’t drive.  We probably wouldn’t be able to offer The Learning Program because the aides who work with our students are volunteer therapy and social services students,” she said.

Lange said there are benefits to volunteering anywhere, but the DSAWM provides many options to work closely with people with Down syndrome and create meaningful connections. “It’s important to give volunteers the opportunity to get to know the people we serve because then both people benefit,” said Lange. “I’ve met volunteers who were inspired to engage people with differences in their communities and I’ve even spoken with some who were considering study or employment in a field related to supporting people with disabilities because of their experiences.”

Lange ended by saying, “Our volunteers are given the opportunity to really get to know someone with a disability and that can be life changing. Grand Valley students are especially helpful at motivating adolescents and teens with Down syndrome.  Our young people look up to GVSU students and really enjoy connecting with them as peers.”

If you are interested in volunteering with the Down Syndrome Association of West Michigan or would like to learn more about it, visit https://dsawm.org/ or email volunteer@dsawm.org to contact the association directly.

 

 

Kyra’s Got Game!

When inclusion extends beyond the classroom, everyone benefits.  On a cold Saturday in January, the players, coaches and parents of the East Grand Rapids Youth Recreation basketball program illustrated how a culture of inclusion created a meaningful experience for an entire community.

The Green Team was well known as the best team in the 5^th & 6^th grade girls’ league and was practically guaranteed a win against the White Team. Late in the game the Green Team gave the ball to a player from the White Team.  Kyra is a 6^th grader at East Grand Rapids Middle School who happens to have Down syndrome. When the Green Team gave her the opportunity, Kyra shot, rebounded and made a basket.  That initial success gave Kyra the confidence to score a total of 10 points throughout the game.  As luck would have it, Kyra’s dad, sister and grandparents were all at the game to share in her success.  Said Kyra’s mom, Kendra Edwards, “It was one of the highlights of our year.”

After the game, Coach Scott Markham presented Kyra with the game ball, which he had inscribed with her name, the date of the game and her point total.  According to Edwards, this was just another example of Markham’s commitment to including Kyra on the team: “We are thankful for the support of her team and coach.  He has displayed kindness and inclusiveness throughout the years Kyra has played.”  Kyra keeps the game ball in a place of honor in her family room among her dad’s awards.

Mike McDonald, whose daughter Clare referees the youth recreation league games, sums it up well:  “In an era of increased rudeness and bullying I am touched by this very simple act of kindness and generosity towards Kyra. What a great example of sportsmanship by both teams to include Kyra and give her the opportunity to achieve her potential and be part of the team experience.”  On that day in January, everyone won.

Parent Voices Needed – Chris Buczek, RN, BSN

Immunizations once nearly eradicated many diseases from our population, but they’re making a dangerous comeback. In 2014, Michigan had a drop of 5% in the number of children immunized and we now rank 47th in the nation. Michigan has the sixth highest rate of non-medical immunization waivers for kindergarten entry—meaning we have many children entering school who are not immunized.

Two bills introduced this week in the state Legislature would curtail efforts to improve Michigan’s childhood immunization rate and further endanger our most vulnerable citizens:

House Bill 5126 would eliminate the rule requiring parents seeking non-medical waivers to receive balanced education about the benefits and risks of immunizations from their local public health department.

House Bill 5127 would strip a local public health department’s ability to exclude children with a communicable disease or those who lack vaccine protection, from attending school during an outbreak.

In light of this new legislation and ongoing misinformation campaigns from anti-vaccination groups, we are seeking individuals who can speak to how vaccines benefit them and their family. Maybe you have been touched by vaccine-preventable disease or you have an infant too young to be fully immunized. Maybe you have an immuno-compromised child or older adult in your life who you want to protect. Maybe you work in the medical field with pediatric cancer or organ transplant patients who cannot be fully immunized for medical reasons.

Whatever the reason you feel connected to the issue of vaccination, we want to enlist your help in our efforts to ensure public policy and public opinion reflect the need for strong immunization rates.  While we will always provide clear, science-based information about vaccines and vaccine-preventable diseases, we need you to share your real-life examples about how vaccines save lives.

Opportunities to speak could include providing testimony to legislative committees, talking with the press or meeting with individual legislators to talk about your story. We would assist you in crafting your message and arranging these meetings.

If you are willing to be part of this vaccine positive network, or would like to learn more, please send an e-mail to Bree Anderson at banderson@mcmch.org at the Michigan Council for Maternal and Child Health.  MCMCH is part of a group of statewide advocacy organizations working together proactively on legislation and policy to improve immunization rates in Michigan.

For more information about vaccinations, contact Kent County Public Health Program Supervisor Chris Buczek at chris.buczek@kentcountymi.gov.

Hope for Children in China

In honor of National Adoption Month, we share this post from our friends at Bethany Christian Services.  Bethany is a West Michigan-based, globally-active organization that in part focuses on adoption of children with Down syndrome and other disabilities.

Stigma and other barriers to success are all too common for people with Down syndrome, in the United States and across the globe. Abandoned children in China with Down syndrome face an uphill battle in finding a family in their home country. The stigma is so extreme it often warrants them “unadoptable.”

A new effort is underway to bring hope to these children. The Bamboo Project is a focused recruitment effort created by Bethany Christian Services to find families for children with Down syndrome. In less than two years, 10 children have been matched with loving forever families through the project.

Zechariah is an introverted boy who enjoys listening to music and playing with toys. When there is music playing, he will laugh happily. Terah’s caregivers describe her as a quiet girl with a rosy face, ready smile, and glimmer in her eyes. She is fond of being held and will blow kisses. Though quiet, Asher is an energetic little boy with a beautiful smile. He recognizes familiar people and is happy to see his caregivers.

These children are just some of the 30 waiting right now for loving homes, with more children still to come. Given the response we have seen from families across the country, and the support we’ve received from advocates for children with Down syndrome, We are confident that we will be able to match these children with forever families in the near future.

Families interested in the International Adoption Process with Bethany for a child in the Bamboo Project are often able to start and finish their process in 12-15 months.  We want to do our best to help these children find forever families as soon as possible!

Even if you are not ready to take the first steps of International Adoption, we’d love to share more information about total cost and time frames, specific for your family. This link is to our free preliminary application:  https://www.bethany.org/prelim. By taking a few minutes to fill out this application, you will be given you access to all of our 400 Waiting Children profiles, including our Bamboo children! 

Bethany Christian Services Global and the China Team are committed to walking beside adoptive families. We recognize that finances may be a barrier in pursuing an adoption of a child with special placement needs and have worked to secure specialized financial grants that are available to you, exclusively within the Bamboo project. In addition, our close-knit community of Bamboo families are eager to support and encourage other families throughout their adoption process and once they are home.

A growing number of families are recognizing the enormous need to provide these children with love and care and are opening their hearts and homes to these little ones. The Bamboo Project and the families that have committed to it are leading the charge for positive change and progress for Chinese children with Down syndrome.

To learn more about adopting through the Bamboo Project, please contact Bethany Global’s China team at 1.800.652.7082 or email china@bethany.org.

Learn more about Bethany’s adoption services here in the United States and around the world at Bethany.org.

 

This blog post was provided by Bethany Christian Services and is used with permission.

It’s National Adoption Month

November is National Adoption Month! DSAWM supports many families who grew through adoption, and we look forward to sharing stories from our families and community partners about adopting children with Down syndrome.

Don’t forget, DSAWM offers Adoption Assistance for our members to help offset costs associated with adopting a child with Down syndrome. Details can be found on the Adoption Assistance Application.

I Step Up for Eden – Danielle Boersma

At first, the possibility of my child having Down syndrome didn’t give me a big scare. God gave me a peace – I felt like my non-invasive prenatal testing (NIPT) would either not be positive or it would be okay, regardless. With all my Google searching of soft markers I had been given, I happened upon a website that had a very positive outlook on a Down syndrome diagnosis. I knew how much we loved the kids we already had and what a gift and a joy they were to our lives. Down syndrome could not change that.

Fast forward a couple of weeks: My husband and I were waiting to meet with the specialist. The night before he had called to inform us our NIPT came back positive for trisomy 21 (Down syndrome). I’d be lying if I said we weren’t somewhat shocked and hurt by the news – nothing really prepares you for it. Still, we knew to some degree it would be okay. Perhaps our visit today would help encourage that. The discussion began with our doctor explaining chromosomes to us and how Down syndrome occurs. When my husband asked if there are varying degrees of Down syndrome, the doctor’s response was not at all what I expected to hear.  “No,” he said shaking his head and half looking down at the table. “They are all severely mentally retarded.”

Everything else is a blur to me. I remember looking from the doctor to my husband and back again. The look of sadness on my husband’s face was so hard to take and I found myself questioning the things I read online. Yes, I knew for some it could be severe, but for all? Then I heard “they have anger and aggression issues.” Nothing positive was said. The doctor finally stopped and offered to go print some information to better answer our questions.

When he left the room I tried to convince my husband that the doctor could not be right. I had read many good things! In that moment all I could think to say was, “There are people with Down syndrome going to college!” but even then I wasn’t certain where I read it. Our doctor was the professional we trusted. Wouldn’t he know better than my Google searches? The doctor came back and handed us some paperwork obviously photocopied from a medical book.  While he left to prepare another room for my non-stress test we sat alone, silently skimming the information he had given, becoming more disheartened.

Words like “malformations,” “mongol’ and “idiot” were used to describe our child. Whole paragraphs negatively noted how “different” she would look. We were feeling pretty low, and I kept trying to encourage my husband (and myself) by continually bringing up this college thing, but it was all in vain. As my non-stress test was performed, my husband read further, but I refused to read anymore. When he got to a particular section detailing a “40 year life expectancy” for our baby, it was too much. The doctor asked if we had any more questions for him after reading the material, but we had heard as much as we could handle. We cried in the car, and cried even more when we got home. We mourned the life our daughter would have, according to our doctor and that paperwork.

Still, I knew what I had read online did not line up with the information we had received from the doctor. In the coming days, searching out updated and correct information helped us the most. We were given new hope watching videos of cute kids proudly reciting or showcasing new things they had learned. We were encouraged reading articles about inclusion and books with forwards written by very capable adults with Down syndrome and, yes, even the latest on those that were college bound!

Thankfully, my friend introduced me to a new friend who has a daughter with Down syndrome. Our first meeting was a playdate and she was kind enough to bring me a goodie bag from DSAWM. In that bag was a binder filled with loads of accurate and informative material – nothing like what our doctor had given us. The more we properly educated ourselves, the easier we could breathe. Now that our sweet Eden is here, we truly know that God does not make mistakes. She is perfect.

On October 10th, my family and I will participate in the Step Up for Down Syndrome walk for the first time. I Step Up so that others may become better educated about Down syndrome, and that accurate resources are readily available to those who need them. The DSAWM works hard to do just that! Our medical professionals have the power to make or break a diagnosis experience. It is my hope that stories like mine will soon become rare and – eventually – altogether a thing of the past.

Learn more about supporting the Boersma’s at Step Up for Down Syndrome
.

I Step Up for Equality – Lacey Charboneau

I began my work with individuals with special needs well over a decade ago and have never wanted to do anything else. My reasons for stepping up go beyond it being part of my job as Program Coordinator for DSAWM. I Step Up because I personally believe that every human being deserves the same rights, dignity, choice, and opportunities as everyone else.

I don’t Step Up because people with Down syndrome inspire me or because they have to work so much harder to accomplish their goals. I’m not saying those things aren’t true, but it’s not what motivates me the most. What motivates me to Step Up is my belief that – although we have come so far in the past 30 years – we still have a long way to go.

I will Step Up until our education system offers inclusive experiences to all students.

I will Step Up until employers see the value in hiring a diverse workforce.

I will Step Up until safe and accessible transportation is available to everyone who needs it to get to work, school and social activities.

And for darn sure I will Step Up until people with disabilities are viewed as equal and important members of humanity.

I hope you’ll join me this Saturday as we Step Up for Down syndrome!

I Step Up With Amazing Grace – Sara Middlebrook

Grace is our Amazing Grace – my saving Grace some days. She has succeeded in so many ways – she is such a joy and makes my heart dance and constantly brings a smile to my face. She’s fully included in her 2^nd grade class with supportive teachers, rides a bike, plays with dolls, plays dress up, loves to play the iPad, loves to dance, eat ice cream and eat popcorn – in more ways than not, she’s a typical little seven year old girl. She just happens to have an extra chromosome.

Step Up for Down Syndrome being a “walk” always brings up memories of Grace learning how to walk. Grace walked on her own when she was 28 months old and it was BEAUTIFUL! I cried joyful tears of excitement for the newfound freedom my little girl would have! (And she could now wear DRESSES!!! Which used to get all tangled up when trying to crawl for more than two years, mind you.)

I remember all the hard work she did for us and her therapists and that all of her “play” had an ulterior motive of strengthening some muscle to aid in her mobility. That little peanut never quit trying! Her spirit of determination both amazed me and broke my heart. Knowing that I had a daughter who was willing to work that hard for something that came so naturally and easily to so many others filled my heart to overflowing; but it broke me to know that she had to work that much harder to walk and she would have to work that much harder in many other things in life yet to come.

Her sweet little chubby legs would teeter on the brink of taking a step and then not quite make it, getting stronger every time she tried. We kept thinking that the next time would be it – and that went on for months! And then, she walked. I watched her come across the grass towards me. With each cautious step, I didn’t know if I should keep quiet so as to not spook her for fear of her stopping, or to shriek with excitement because I couldn’t contain myself! I honestly don’t remember what I did, but I remember what SHE did! We never gave up on her, and she never quit trying and she never gave up on herself.

So for the Step Up for Down Syndrome Walk, we walk for Amazing Grace.  We walk for the extra time we were blessed to hold her hand before she could walk on her own. We also walk for the families and friends who never gave up on those others who have been blessed with an extra chromosome – for the potential they saw in them when others didn’t.  And the Down Syndrome Association of West Michigan has been there for us through all of those “steps” along the way.  Know with your support they will be there for those steps yet to come in the walk we have ahead of us. I am so thankful every day that God has bestowed me the privilege of raising one of His daughters and that you have joined us on this “walk” of life in some way!

To support Amazing Grace visit Step Up for Down Syndrome.

I Step Up Because A Life With Down Syndrome Is a Life Worth Living

“God only gives special children to special people.” “We are never given more than we can handle.” It’s meant to be comforting, but it feels like people are saying, “You should be held to a higher standard, you should bear more than others, this happened to you because you deserve it.”

When it looked like we might lose the baby, my doctor suggested non-invasive prenatal testing to determine a cause and any possible treatments.  While we waited for the results of our prenatal testing, I searched the internet for information about the possible results, especially Down syndrome. I read about heart defects, special education battles, necessary therapies that are not covered by insurance, blatant discrimination. There were videos and memes mocking people with Down syndrome. A woman commented on a message board that her twin brother had Down syndrome and had been institutionalized his entire life – she said she had never known him to be happy and it would have been better if he had never been born.

I thought a person with Down syndrome would have a terrible life dependent on others and be ostracized by the world. I thought that person would be a burden and an embarrassment to me and my family. I thought I would fail a child with Down syndrome – that I wasn’t capable of providing that level of care. When it was confirmed that our baby did have Down syndrome, I was afraid. I was being given a special child and I didn’t want her. I wanted to terminate my pregnancy.

But then my geneticist gave me The Guide for New & Expectant Parents from the Down Syndrome Association of West Michigan.  I learned the facts about Down syndrome.  I learned most people with Down syndrome have mild to moderate intellectual impairment.  I learned my baby was being born at a time when people with Down syndrome were receiving world class medical care, being educated alongside their typical peers, living independently, working, getting married and leading longer and happier lives than ever before. Most importantly though, I learned that I didn’t have to be special – I wasn’t in this alone.  Yes, I had been given more than I could bear, but – with help – I could do this. Twenty-two weeks later, we welcomed Evelyn to our family.  It hasn’t always been easy, but it’s been wonderful just the same.

Raising a child with Down syndrome has taught me gratitude. It’s taught me that every small success and every bit of good should be celebrated.  I don’t take the small things for granted anymore. I find joy in moments I used to rush through.

Evelyn has taught me to be brave. Every day she bravely faces challenges that would deter many adults. She has taught me to believe in myself and the people around me and to bravely stand up for what is right.

Raising a child with Down syndrome has changed my definition of success. I don’t put much value in being first or best anymore. I value the growth and knowledge gained along the way more than crossing the finish line. I know the value in showing up and working hard and achieving a personal best and the rewards of helping others achieve their’s. 

Loving someone with a disability took away my fear of people with disabilities. I’m no longer afraid that I will say or do the wrong thing and accidentally offend someone. I’ve gotten to know many amazing people because of this.

In the more than six years since I received that diagnosis, I’ve had the opportunity to meet lots of families like mine. Sadly, I’ve discovered that while raising a child with Down syndrome has the same positive impacts for them, many received their diagnosis differently. Some parents are given outdated, incorrect information about Down syndrome or none at all. I’ve met moms and dads who were told their child would never walk, dress themselves or use the toilet.  I’ve also met families who were advised that the only realistic option was to terminate their pregnancy.

My story could have been so different had it not been for the DSAWM.

Imagine I had walked into the geneticist’s office and she had not handed me that guide. I would have left her office with only inaccurate and misrepresentative information I’d found online in my own limited research. It breaks my heart to say it, but there is a good chance I would have chosen to terminate my pregnancy. In doing so I would have missed out on all the positive changes Evelyn has made in my life and the lives of those around us. I would be a different person than I am today.

Now imagine that sometime later – after my “near miss” with Down syndrome – I happen upon accurate information about Down syndrome. Maybe I see children with Down syndrome learning and playing alongside my children at school or have a co-worker with Down syndrome. I realize that I didn’t have the whole story when I made a huge decision. What would feel like to discover I had made the difficult choice to terminate my pregnancy without having all the facts? How would you feel?

Luckily, that’s not what happened, but it still weighs heavily on my heart. I just got lucky. I know that other mom’s just like me around the world, across this country, and right here in West Michigan are being put in that position every day. They are being asked to make life-changing decisions without knowing the whole story.

The truth is, anyone can be given a special child. But having a child with Down syndrome has made me special. It made me a better version of myself. I have a new appreciation for the world around me. It’s as if before I was living in black and white, and now its techni-color.

Honestly, sometimes we are given more than we can handle. I wasn’t prepared when I received that diagnosis, but with the proper knowledge and support I became someone who could handle it. Every day, I am empowered to do what is best for my daughter because I have the DSAWM standing behind me providing the tools our family, our school and our community need to support her in reaching her full potential.

On October 10^th, I will join more than 1,200 people from across West Michigan at Step Up for Down Syndrome in celebrating the gifts that I personally – and we as a community – have been given by knowing someone with Down syndrome. Yes, I “Step Up” to celebrate Evelyn and the way she continues to change my life. But I also “Step Up” for the moms and dads who have yet to receive a diagnosis of Down syndrome – to raise money to train the medical professionals who will give them the news and fund services to support those families like mine in giving their children with Down syndrome the same opportunities as any other child. Because I believe a life with Down syndrome is a life worth living. I’m thankful everyday that I learned that in time to make the right choice for me and my family.  All parents deserve the right to make educated choices and by supporting DSAWM we can make informed decisions the norm.

Make sure all West Michigan families receiving a diagnosis of Down syndrome also receive accurate information about Down syndrome by visiting Step Up for Down Syndrome.

I Step Up For Easton – Callie Sterk

When  I received results from a blood test that there was a 1 in over 1,000 chance that my son, Easton, might have Down Syndrome, I put it in the back of my mind certain he didn’t have it. Every other test came back negative.

After Easton was born, the test came back positive for Down syndrome. It felt like I had been hit by a truck. I was shocked, scared and nervous. But that didn’t last long because I decided that I was blessed with him for a reason and I would accept it. I wouldn’t change his diagnosis for anything in this world, and wouldn’t want him any other way.

I Step Up for multiple reasons. The first is to raise awareness. Many people have never met or known someone with Down syndrome – I was one of those people before Easton was born. I want people to know that just because somebody has Down syndrome – it doesn’t mean they can’t do what anybody else can do.

The second reason is to connect with so many other people and families in the Down syndrome community. It’s so inspiring to be among all of the amazing people with and without Down syndrome in our community.

Another reason is to help raise funds for the DSAWM. The services they provide for people with Down syndrome and their families are absolutely awesome! I couldn’t be more blessed to be a part of it and this is my way of giving back.

The most important reason I Step Up is Easton. I am so blessed to be his Mommy and will do anything possible to make his life everything I know it can be be! The support and love that he has from all of our family, friends, and the Down syndrome community is beyond what I could have ever imagined! Easton has changed more lives than he will ever realize and I’m proud he is my son.

To join Callie & Easton in supporting DSAWM visit her Step Up for Down Syndrome page.