My son, Bryce, is just three months old. He was diagnosed with a rare genetic disorder just days after birth.

He has Cornelia de Lange Syndrome (CdLS), a genetic mutation that causes many physical, cognitive and medical challenges. Also known as Brachmann-de Lange Syndrome (BdLS), it occurs in about one in 10,000 live births.

Many of Bryce’s physical features are affected. He has excessive hair, long eyelashes, upturned nose, low-set ears, extra small stature, eyebrows that meet in the middle, short arms, small hands and feet and an extra finger.

Some of his medical issues include, but are not limited to, multiple heart defects, GERD (severe reflux), inability to feed orally (causing the need for a G-tube as well as a fundoplication surgery), undescended testicles, hypospadia and much more.

We have been in the NICU for three months now, and they still can’t seem to find out reasons for some of his issues. He is currently breathing on his own, but every few days, his lungs collapse and he goes into complete respiratory failure.

We cannot find a cause or reason for this, so we just have to keep on “keeping on.” I know that we will make it through this, but I also know that this will be a life full of complications and hospital stays.

He is definitely a fighter though, and he proves that to us every day.

He has four brothers and sisters and a mommy and daddy who love him more than the entire world and many, many more who love and support him.

6 thoughts on “Bryce, Who Has Cornelia de Lange Syndrome, Is A Fighter”

  1. Heidi says:

    My son also has CdLS. The health issues can be very complicated in some children. There is a big group on Facebook called the CdLS Discussion Group – it is for parents and caregivers of people with CdLS. You are welcome to join and get support and talk about medical issues are whatever you would like. I hope the doctors are able to figure out the respiratory issues soon.

  2. christine g butler says:

    My daughter Harley also has CDLS. She will be 15 on Thursday october 18th. There are challenges but the rewards far outweigh the challenges. GOD wouldn’t give you more than you can handle although sometimes it seems like it,.

  3. Jennifer Tucker says:

    I am Jen. I am a mother of a 26 years old son, Paul with CdLS. We have a wonderful support group on Facebook. If you have any question, please don’t hesitate to reach out. When Paul was born, they have never heard of CdLS and so we travel the journey all alone. You have friends in our group. You have support and whatever else that will help to comfort you. May God bless Bryce and your family.
    Reaching out to you with Love and understanding.

  4. We are sad to announce, Bryce lost his life with CdLS. We give our condolences to his family and have Hope in our hearts that more awareness will be brought to such a difficult disease. Please feel free to share your heartfelt condolences here.

  5. april santos says:

    My daughter also has cdls.. she. 10Months old now…I really don’t know this syndrome cdls..I just pray and talk ask lord to protect my baby.I surrender everything. Coz I know God has plan…for. all of us.

  6. april santos says:

    My daughter also has cdls.. she. 10Months old now… God has plan…for. all of us.

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