Parenting a Child with Rare Disease: The Trials and Tribulations

This is the story of Eddie and Sarah Yang, their children, and challenges they face with a rare disease called congenital central hypoventilation syndrome (CCHS).

Eddie and Sarah married in 2006 after meeting in grad school. They dreamed of their promising future together with three beautiful kids, and they got just that. There’s Edison, 10, sporty yet bookwormish. Caitlyn, 8, kind and brilliant in her own ways. Then there’s Madi, 6, the artist of the bunch with an affinity for fashion and all things drama.

She didn’t ask for it, but Madi was born with congenital central hypoventilation syndrome (CCHS).

This disease exists because of a mutation in the Phox2b gene, probably the most important gene in the body because it’s responsible for the body’s breathing, digestion, temperature regulation, heart rate, swallowing, and more. Try to imagine not realizing that you need to breathe. As was the case with Madi, who needed to be put on a ventilator at all times.

To learn more about central hypoventilation syndrome (CCHS) and it’s symptoms, click here.

This tragedy was proof that strength really does dwell within numbers. Edison and Caitlyn were devastated after hearing their sister’s diagnosis. Edison has stepped up as big brother with a strong will to care for his sister and an insatiable need to make her better. The siblings have all been closer than ever.

As for Eddy and Sarah, their marriage has been at a constant pressure. When you look at the statistics, the divorce rate for families with special-needs children is much higher, 30% to 40% higher, compared to those families without special-needs kids. Though the situation has posed great marital challenges, they are still together, still there for each other. Sometimes they have to pull each other back into reality for the realization that they will always have each other and that nobody does it alone.

Because they are both in the medical field, they have become outspoken advocates, reaching out to neuropharmacology companies who’s cutting edge technology could make their lives easier. Sarah has also run two marathons to raise funds for the UDN (undiagnosed disease) program for NORD.

Nobody asks for these challenges. Nobody plans for it. Sarah’s outlook on the unexpected change of course in her life is optimistic and one to learn from. As quoted in People:

Before Madi was born, I had so many expectations for our family life. I wanted to be that mom who always served super-healthy meals for her kids. I think by Madi’s diagnosis throwing our life off track, it allowed us to choose not to get back on and to go off-road instead.

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