Confronting Cri du Chat with Grit and Grace

Brandon and Christina Brown were overjoyed to be first-time parents. Like most, they wondered if their baby would be a boy or a girl, and they hoped he or she would be healthy. The young couple welcomed Graham Timothy to their world on St. Patrick’s Day, 2016. All seemed well at first, but then came a string of health problems that worried the young couple. Graham began to have trouble with feedings.

In some ways, Graham is a typical one year-old. He loves being with family and friends, petting his dog, Sullivan, and swinging outside. When Graham was diagnosed with Cri du Chat, his parents thought it was the end of their world. Over the past year, they have decided to embrace the precious moments that they have with Graham such as the celebration of his first birthday. Photo courtesy of Brown family.

He was diagnosed with acid reflux and milk protein intolerance and was referred for feeding therapy. Their feeding therapist at Pediatric Boulevard in Indian Trail noticed Graham had general muscle weakness and recommended physical therapy. The physical therapist was concerned that Graham’s eyes were delayed in their ability to track movement.When the ophthalmologist who saw Graham referred him to a neurologist for an MRI, the Browns were in a state of alarm. Their neurologist ordered genetic testing based on the MRI results, and the couple finally had a diagnosis for the condition affecting their precious boy:  Cri du Chat.

When the ophthalmologist who saw Graham referred him to a neurologist for an MRI, the Browns were in a state of alarm. Their neurologist ordered genetic testing based on the MRI results, and the couple finally had a diagnosis for the condition affecting their precious boy:  Cri du Chat.

Children with Cri du Chat or 5P- can have problems with sitting up, standing, and walking. Graham Brown goes to physical therapy in Indian Trail. The Browns celebrate their son each day. “He is a hard worker. He has the sweetest demeanor, and his smile and laugh light up our life.” Photo courtesy of Brown family.

Each year in the U.S., around 50 to 60 children are born with Cri du Chat, also called 5P- (minus).  French for “cry of the cat,” babies born with the condition have a high-pitched cry. “The reason Cri du Chat is also called 5P- is because there is a genetic deletion on the short arm of the fifth chromosome, usually a completely spontaneous occurrence,” Christina explains.

What this means for children who are affected is that they can have low birth weight, poor muscle tone, microcephaly, and other medical complications. “Because 5P- is so rare, the doctors don’t know a lot about it, unfortunately,” Christina says. “With 5P- comes developmental and intellectual delays. Graham’s gross motor skills are delayed as he is working on sitting up and pushing on his arms. His legs are stronger, but his arms are weak. It is a spectrum disorder [meaning] we don’t know what he will and will not be able to do.”

“Getting the results of the genetic tests was one of the worst days of our lives,” Brandon adds. “You go from picturing your child running to the door to meet you to wondering if he’ll ever be able to say, ‘I love you.’ The only way we survived was to have our families come alongside us and tell us they would be there to help.”



After Graham’s diagnosis, Brandon’s and Christina’s families and friends came through with flying colors. “We have a whole support village!” Christina exclaims. “The most amazing thing that has come out of this diagnosis is the support system we have.” Grandparents, aunts, and uncles pitch in to help the Browns through the day. They watch Graham when Christina goes to her job as school counselor at Mint Hill Middle and Brandon works as an engineer at AECOM. They cook meals and give the couple time for an occasional date night. “Graham has truly brought us all together in the deepest way possible.

They sat with us while we received the news, wept with us, and held onto us as we fell apart.They were with us every step of the way,” Brandon says.

Graham attends physical therapy and feeding therapy every week.

One year-old, Graham Brown visits his feeding and speech therapist, Michelle Thompson (left) and his physical therapist, Tia Webb, each week. Graham’s parents say that he has made so much progress, and they celebrate every step of progress, no matter how small. Photo courtesy of Brown family.

Brandon says that the therapists have been incredible, but the Browns still take their roles as Graham’s advocates seriously. “There are many roadblocks in the healthcare and governmental assistance programs for families with children with special needs,” Brandon notes. “We have had to learn how to fight for him and for his needs. We are learning to be assertive and confront issues with both grace and grit.”

Admittedly, the Browns don’t feel qualified to give advice on being a parent to a child with special needs since they are only one year into their journey. But the couple offers thoughts from their own experience. They say:

  1. First, allow yourself to have hard moments. Some days are harder than others, but we have found that we have more good days than bad ones.
  2. Don’t be afraid to ask for help. Humble yourself. You can’t do it all on your own.
  3. Speak up! Advocate and fight for your child’s needs and your own needs.
  4. Try not to compare your journey to that of others. We sometimes find ourselves comparing Graham to other “typical” children. That’s not fair to him or to us. Everyone’s story is different, and this is our journey that we have been entrusted with.
  5. Even though it’s a devastating experience, it doesn’t mean it’s the end of the world. When we received the diagnosis we really thought our life was over. When you feel defeated you have a choice to make. You can stay in the sadness and let it defeat you, or you can dig deep, grab hold, and choose joy. We choose to love our son unconditionally, and we believe there is a purpose and calling in this.  We believe that our story will be an inspiration to others as we choose joy each day.  Graham makes it easy to do that.  He is the sweetest little boy and has the most precious smile and contagious giggle.
The 5K for 5P- will be held on Saturday, May 6th at Mint Hill Middle School at 8:30 a.m. “We want people of all ages and abilities to feel comfortable participating,” Brandon Brown says. All entry fees benefit the 5P- Society, which supports families with loved ones with Cri-du-Chat. Photo courtesy of Brown family.

The Browns have also chosen to do their part to raise money and awareness of 5P-.  They have organized a 5K to take place on Saturday, May 6th at Mint Hill Middle School.  Check-in starts at 8:30 a.m. and the race begins around 9:00.  “It’s a non-competitive event as we want people of all ages and abilities to feel comfortable participating,” Brandon says. “We will have people walking and running.”

Click here to register. Make sure to click “join a team” and select “Graham’s Gang.” All entry fees benefit the 5P- Society, which supports families with loved ones with Cri-du-Chat.  Contact Brandon and Christina at cfbrown814@gmail.com for more information.

Already, 150 people have registered for the event. “As a family and community, we wanted to come together to complete the 5K,” Brandon says. “We saw it as an opportunity to raise awareness in our community for 5P- and to celebrate families living with Cri-du-Chat.”

To promote awareness of 5P- (also called Cri du Chat), participants in the 5K on May 6th will be wearing one sock scrunched down and the other normal length to represent the bands of the fifth chromosome. On this chromosome, there is the long arm and the short arm with the deletion that causes the genetic condition, hence the shorter sock. Photo courtesy of fivepminus.org.

 

 




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Candice DuVernois
Candice DuVernois works as a freelance writer while waiting expectantly for her book deal to come through. She wrote her first poem when she was only seven years old, and she hasn’t stopped dabbling since. She enjoys writing articles in a lighthearted tone about the good people of Mint Hill, always striving to make them shine. She lives in Mint Hill with her husband, Dave, and her two dogs who she tries to get into the paper as often as possible (the dogs, not Dave). Matthew 22:37-39.