Thank you for even getting this far to learn more about Bryson. I am family friend to Madeline, Curtis, Landon & Bryson. They are your typical family and they could use some support in any way that you are able to provide. Please share this page and spread the word about Spastic Diplegic Cerebral Palsy and Worster-Drought Syndrome.
Bryson is a spirited, happy boy who is about to turn two years old. He loves to play with trucks, cars, and Playdoh. Bryson’s biggest role model is his big brother Landon. They are best friends and love playing with one another. My husband, Curtis, and I love being parents to these two wonderful boys. Never did we think that anything like this would happen to us.
We were very lucky because Bryson only had a few colds like any other child. Starting in November 2016, however, the illnesses became more frequent and more perplexing. He began to have difficulties breathing for no readily identified reason, and began to have scary instances where his lips turned blue. All of these breathing problems led to emergency room visits, breathing treatments, and medicines. Little did we know then that we were about to enter a long journey of consultations with medical specialists and diagnostic procedures at several hospitals.
Bryson was referred to several different specialists, including a pediatric ENT (Ear, Nose and Throat) specialist, who identified a vocal cord problem. To obtain more diagnostic information, Bryson underwent several endoscopy/bronchoscopy procedures under anesthesia; had a hearing test; had sedated brain and neck MRI procedures as well as an echocardiogram; and was evaluated by a neurologist. Doctors became concerned that Bryson was walking on his toes and frequently falling. Despite all this, we could not receive the answers we needed about Bryson’s health problems.
Finally, we reached out to Johns Hopkins Hospital in Baltimore, Maryland. Here, we met with another pediatric ENT, and Bryson had more tests done. The ENT confirmed that Bryson had a vocal cord problem, but we learned so much more. Bryson does have a vocal cord problem; he has nodules on each side. Bryson also has elliptical cricoid (trachea rings are not formed properly). This causes Bryson breathing problems and causes the constant stridor that his little body endures on a regular basis. He also has reflux that causes him to turn blue. Bryson had been choking while eating and drinking and we were sent to a Gastroenterologist and a Pulmonary specialist for a swallow study. The Pulmonary doctor preformed an hour long consult where she watched Bryson swallow and eat. He later had a barium swallow study where the x-ray machine traced the barium he swallowed down his esophagus into his stomach. This study showed Bryson aspirated while eating and drinking.
After more than a year of breathing treatments, diagnostic testing, and countless doctors’ visits, on the evening of Tuesday, January 9th, 2018 we finally were given answers to what has been happening to our sweet boy. We were told Bryson has Spastic Diplegic Cerebral Palsy and Worster-Drought Syndrome (WDS). Spastic Diplegic Cerebral Palsy is when muscle stiffness occurs primarily in the legs. This has caused Bryson to constantly fall while walking. WDS is a rare type of cerebral palsy that affects the muscles around the mouth and throat. This causes problems with swallowing, feeding, talking, dribbling and other actions controlled by these muscles. WDS causes swallowing to be disorganized, with the risk that food, drinks, or even saliva spills into the lungs (aspiration).
Bryson aspirates while eating and drinking which has caused him to have aspiration pneumonia. He constantly is drooling, and his tongue does not move properly causing Bryson to not be able to chew properly or talk. He is very delayed in speech because he cannot properly form words due to his mouth muscles not working properly. He has acid reflux so bad that he turns blue and most likely is aspirating on that because it is coming up his esophagus and his vocal cords are closing to protect themselves which makes him turn blue.
Because his aspiration problems are so severe, almost immediately after the WDS diagnosis, in January 2018 Bryson underwent surgery to insert a feeding tube (G-tube) in his stomach. After eating and drinking since the age of 3 months, Bryson is now dealing with the reality of not eating or drinking anything by mouth. Our sweet boy is too young to understand why he can no longer eat or drink when the rest of the family does. This may be in place for life.
Additionally, Bryson has been fitted for two pairs of special leg braces, for day and night wear. Most likely these will have to be replaced each year as he grows.
Expenses and Moving Forward
Bryson is lucky to be diagnosed so young, but it is simply too early to know for sure what he will need down the line. Every penny donated will go toward the current and future medical expenses. The amount of money that will be required will exceed our family's financial ability. The major costs to our family are listed below:
Bryson has had multiple stays in the hospital that have required a variety of testing and treatments. To date he has had a brain and neck MRI, multiple x-rays of the chest and neck, bronchoscopy and endoscopy, surgery to repair his Laryngeal Cleft, Surgery insertion for G- Tube, multiple biopsies of his esophagus and countless ER trips for low oxygen levels.
Bryson is fed every 4 hours for an hour at a time with Pediasure formula that is specially made for a feeding tube.
He is on daily medicine for his reflux
Weekly physical therapy
He will receive Botox injections every 3 months
Wear night time splints and daily ankle braces
Everyday living expenses
We are a working-class family. Curtis works hard as a heavy equipment mechanic. I left my job a few years ago to be a stay-at-home mother until the kids are in school full-time. Curtis has had to miss work and the loss of income and the additional expenses has been tough.
How You Can Help:
Make a donation
We are grateful for every amount we receive, no matter how small. We promise all the funds raised will go directly to helping Bryson. Curtis and I would never ask for this kind of help, as we willingly took on the responsibility of providing well for our children. But with the mounting medical bills our family is facing from this unanticipated health problem, perhaps for the rest of Bryson’s life, we humbly ask for your help.
Spread the word
Share this campaign on all your social media. Talk to your friends and family about it. Send out an email.
Should you have any questions about donating, feel free to contact me. Thank you in advance for supporting our family.
With all our love,
Madeline and Curtis Coker (Bryson’s parents)
Some of this information came from, The child first and always. You can learn more by clicking on the link or searching Worster Drought syndrome
- Debra Cleaves
- Neil hounshell
- Michael Devaney
- Deborah Rose
- Shelby Fanning
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