Brody Van Der Schyff has faced a harrowing two years fighting CHARGE Syndrome, and as a result, his skin has taken the most strain, causing painful itchiness.
Amanzimtoti, South Africa (14 December 2023) – Brody’s parents have watched as their 2-year-old son has sat in agony due to itchy skin that cannot be treated or relieved. They have found a new treatment plan that is renewing their hope and are asking for help in getting the treatment for their son.
CHARGE Syndrome is a rare disease that affects several parts of your child’s body, including their eyes, nerves, heart, nasal passages, genitals and ears. Children diagnosed with this condition have unique facial features and a combination of symptoms that lead to a diagnosis. CHARGE is an acronym for the most common symptoms experienced.
- Coloboma and cranial nerve abnormalities: Missing tissue in your eye that looks like a notch in the iris, difficulty with balance and coordination, paralysis of one side of your face, reduced sense of smell.
- Heart defects: Heart problems present at birth (congenital) include tetralogy of Fallot, ventricular septal defect, atrioventricular canal defect and/or aortic arch abnormalities.
- Atresia of the choanae: A narrow or blocked nasal passage that causes breathing difficulties and sleep apnea.
- Restriction of growth and development: Your child needs extra time to meet height and weight goals for their age, along with developmental milestones for their age.
- Genital abnormalities: Children assigned male at birth are born with a small penis and/or undescended testes (cryptorchidism).
- Ear abnormalities: Abnormalities include ears that stick out or lack lobes and hearing problems that lead to deafness.
Brody was diagnosed with CHARGE Syndrome and underwent several surgeries on his spine. While he has been receiving treatment, one of the things he has struggled with most has been itchy skin. This is not a common symptom but rather an additional one due to the stress on his body from all the hospitalisations and treatments.
His skin itches have been classed as severe, causing him to scratch himself until his skin breaks and prevents him from sleeping a full night. To date, a medical solution has not yet been found that soothes him.
A new treatment, called DUPIXENT, has been found to help with his skin. This is the last option the family can use to help bring Brody relief. The catch is that one session costs R25,000, and it lasts a month. They need to raise enough to treat Brody for an entire year.
“Our Hospital plan doesn’t cover this kind of treatment at all. Even if done in Hopistal. Financially this is not an option for us, but its the only option there seems to be medically to try help Brody and improve his quality of life.”
They have set up a challenge to help get the funds needed for a single injection. They are challenging 500 people to each donate R50.00 to cover the first injection.
“Please come and Join the challenge to help little Brody. We need R25,000.00 for his first injection and then R25,000.00 thereafter for 6 to 12 months.
We need 500 noble souls to pledge R50.00 each towards Brody’s first round of DUPIXENT treatment.
All you need to do is pledge R50.00 and tag 5 friends that you think would pledge R50.00 each ❤
If you are unable to pledge please consider tagging friends and family that can aid in the cause.
Please share and tag as much as you can to help our little fighter. He deserves a better chance at a better quality of life.”
To join the challenge or find the banking details to donate, please take a look at the Brody in CHARGE Facebook page here.