When faced with the unexpected, we often are overwhelmed with fear about of what lies ahead.
If you or a loved one have dealt with a devastating medical diagnosis, many questions arise:
- What happens next?
- What can I do to prepare?
- How do I share this with members of my family?
These are just a few of the many questions we may ask ourselves after hearing a diagnosis that is difficult.
Such is the case for Gareth and Katie Williams.
Their newborn daughter, Daisy, underwent a ‘heel prick test’ – and shortly after, it was confirmed she had cystic fibrosis.
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
Young Daisy may have a variety of symptoms, including:
- Very salty-tasting skin
- Persistent coughing, at times with phlegm
- Frequent lung infections including pneumonia or bronchitis
- Wheezing or shortness of breath
- Poor growth or weight gain in spite of a good appetite
- Frequent greasy, bulky stools or difficulty with bowel movements
For these young parents, it was very scary because they knew next to nothing about the condition. You can read the full story to really understand how they tried to process this diagnosis.
As I read Daisy’s story, the most shocking detail is that she looked perfectly healthy in her inset photo.
But the truth is, the young baby lives a complicated life of treatments, medication, and high risk factors.
Most likely, Daisy could sit and play with her toys in front of me, and I would not see a single symptom from her glowing, round, chubby-cheeked face.
She looks “just fine”, and that’s probably part of the dilemma for her parents. As Daisy seems perfectly healthy from her appearance—the invisible illness factor may influence others to judge Daisy’s diagnosis.
Life with a disease like cystic fibrosis can be frustrating in many ways, including the fact that Daisy’s physical pain isn’t visible from the outside.
Although Daisy’s family may never completely relate to what Gareth and Katie Williams are going through, they are showing support and raising funds to hopeful find a cure in Daisy’s lifetime.
