Our Story

My name is Nigel, and this is the story of my experience with Down Syndrome.

I grew up outside of London on a typical England street. Life and times were simpler, as I and my playmates would play outside much of the day. There was one kid on our street who had Down Syndrome. He was about ten years older than me and my friends. His parents were told by the doctor to set him in front of the fireplace and keep him quiet, for he will never amount to anything.  We only caught the rare glimpse of him looking through the panes of windows; he was scary to us. Other than that, I gave him little thought.

After secondary school, I went to technical school for catering training. Soon after, I was given the opportunity to serve on Mercy Ships in Africa. It was there I felt I had a purpose in life, helping to serve the poor and the needy.

I met my wife, Jen, on the ship. She had grown up in Texas and also had little interaction and experience with children with Down Syndrome.  As a teenager, if she saw a child with Down Syndrome in the hallway at school, she was instructed to direct them back to their classroom on the opposite side of the school, as quickly and quietly as possible.

We got engaged, and I moved to Texas where we were married. Five years after our wedding, we were pregnant. On January 13, 2005 our lives changed. We had forgone preliminary testing, but just prior to Christmas we had an irregular sonogram. The doctors thought our baby might have dwarfism, but Jen was 5 ‘6” and the tallest person in her family. The sonographer told us not to worry, so we didn’t think about it again.

Brooke was born by Cesarean. Jen’s mother is a nurse practitioner and was standing behind me during delivery. When I looked back, I noticed she had a strange look in her eye as she observed that the medical staff was handling things differently than they would during a typical C-section. As Brooke emerged, the doctor said, “Yeah, we think she has Down Syndrome.” She said it so casually, but her words hit me like a brick.” Jen looked at me through her tears and said, “I’m sorry, I’m so sorry.”

Later that day, the pediatrician sat down with us and confirmed Brooke had Down Syndrome.  As he exited, I felt alone and confused.  I called England and woke my parents up in the middle of the night, and despite their expectations of a joyous announcement, I sobbed to them the news about their new grand-daughter. What were they to do 8,000 miles away?

I started reading everything I could read about Down Syndrome while we were in the hospital.  We brought Brooke home, and my work schedule allowed me to have time to bond with her.

We got connected with Early Childhood Intervention, and we were visited by physical and occupational therapists three to four days a week. There were tough days, yet there were many blessings along the way. Our church had a thriving special needs ministry in which we participated. We learned about Kinderfrogs School at TCU, a private school for children with Down Syndrome, that gave us a lot of support and provided intensive therapy for Brooke as soon as she turned 18 months.

Brooke hit a lot of milestones and got her distinctive personality. She is loved by everyone she meets, and has an unending supply of love and hugs. As is typical of a child with Down Syndrome, she can also be quite stubborn. As she began public school, we pushed for mainstreaming and requested that she only be placed in a special needs class when needed.

The Start of the Designer Genes 21

In 2007, we had our son Ben who has become a positive mentor for Brooke. In July of 2011, we went to the National Down Syndrome Conference, and I became aware of a need for quality branded apparel that promoted Down Syndrome awareness. But, I wanted something different, something thought provoking, humorous, and empowering.  It is now a life purpose of mine to spread Down Syndrome awareness.

Why the name? With Down Syndrome, 95% of all cases are caused by one cell having two 21st chromosomes instead of one, so the resulting fertilized egg has three 21st chromosomes.

What Brooke Has Taught Us

Brooke has never stopped amazing us. In fact, she does so daily. I have learned that people can do anything they put their mind to. She is capable of absorbing so much, even if she cannot express her thoughts all the time. Like you and me, she gets bent out of shape if people make comments or say hurtful things, but she is resilient.

Success for her is not graduating valedictorian. Success for Brooke is the incredible joy and smiles she brings to everyone she touches.  I love that about Brooke, so much so that she affects all my decisions. My career goals are not based on how much money I’ll make, but rather how much time I will get to spend with Brooke, because being with her is a giant blessing.

Nigel Barnard
Founder of Designer Genes 21